It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Tuesday, December 11, 2012
5 reasons being in a wheelchair STINKS... and 5 why it can be FUN!
1. He has to wait for someone to help you go to the bathroom and being a mom of 4 sometimes he has to wait a while!
2. He can not do everything he wants to do because sometimes we are too exhausted to lift him. For instance we can't take him to CoCo Keys water park (which he would absolutely LOVE) anymore because we can't carry him up four huge flights of stairs.
3. Getting in and out of rooms and buildings can be very difficult and sometimes impossible on his own.
4. When he drops something on the floor he can not pick it up.
5. He doesn't really have friends outside of school and never goes to peoples houses because no one would know how to care for him.
1. He gets to ride on a lift everyday getting on and off the bus and he has a big ole smile on his face every time.
2. He gets special treatment at times like free trial cell phones at the mall and skipping the super long lines at Disney World.
3. He can do tricks like spin in circles and wheelies AND he always a chair which according to his sisters is pretty lucky!
4. He can hold his younger siblings on his lap and take them for a ride.
5. He gets to hold onto the shopping cart while mom pulls it when shopping alone and loves the fact he is 'pushing' the cart.
Sunday, December 9, 2012
Mr. Independent
Brendan is not the typical ten year old who wants video games or toys for his birthday so we got him an overnight stay at a hotel. His lucky siblings got to benefit too. He loves to swim and sleep in a hotel room, it is probably in the top 5 of his favorite things to do. He was asking to ride the elevator, buy a snack, go back to the room all by himself and guess what?! We let him! We were on the second floor and decided he could try going back to the room on his own after we had gone to it a few times. He has a great memory and we all trailed behind him secretively. My husband took the stairs and waited by the elevator. I stayed way behind just to watch my child who is in a wheelchair make it down a very long hallway, into an elevator and onto the 2nd floor to find our room. He did AWESOME! He talked to people in the hallway and wheeled himself all the way to that elevator. He pushed the button and wheeled in. He made it to the 2nd floor. I jumped in the elevator and headed up after him and he was waiting for me with the room key in hand and said "I can't reach". It was probably one of the proudest moments I have had. When you have a child in a wheelchair independence is hard to give. I think I will always be extra overprotective of him. However, he is the big 10 and I have to let him start to grow up. He is ready and I have to start getting ready and fast! We let him go into a snack area and buy his own snack and he even asked the front desk attendant for help. He requested a bag and a receipt. He is too funny. I think he gets percs being in a wheelchair because he was only charged $1.07 for a large bag of doritos and we had looked at the prices and nothing cost that little!
Brendan continues to amaze me and as long as we let him grow up and try new things he will persevere. I do notice while public buildings have come a long way becoming accessible they still have a long way to go. Being in a wheelchair Brendan couldn't put the key in the room door or open it, it was very heavy! He also couldn't exit the bathroom on his own in the lobby. He couldn't pull open the door and exit on his own. I wonder are these things that he will learn to do or will he never be able to go places all on his own. Will he always need an aid?
While I am so proud watching him become this independent little boy I also get upset and worry about all the obstacles he will continue to face. Not being able to stand or walk makes life very difficult! One things is for sure, he is one awesome kid who doesn't want to let a wheelchair rule his life.
Wednesday, November 28, 2012
Happy 10th Birthday Brendan!
Wow how can it be that 10 years have gone by?! It feels like time has flown by but then when I really think about everything we have been through over the past 10 years it feels as though it should be much longer. I have started to lose count of surgeries and become much less stressed about upcoming botox injections. I can say I have become used to our life and I can't imagine it any other way. I would love to take away all the pain and struggles you have but I know that isn't possible so I just try and make your life the best it can be!
What have we been through over the past 10 years..let me revisit all the 'lovely' memories
* Born on Thanksgiving Day at 33 weeks and weighed a whopping 5 lbs 5 oz!
* You were born blue and had to be rescusitated, however I was never told this..I read this in your records.
* Only spent 11 days in the PICU! We had no idea cerebral palsy would be our future.
* Crankiest baby alive for the next few years...we found out why little by little
* Started EI therapy at 6 months old found out you had brain damage at 11 months old
* I don't remember exactly when but we found out you had a vision problem (CVI), cerebral palsy, and a hole in your heart (ASD)all within months of each other and I nearly lost it. It was a LOT to take in for a young first time mother.
* You wore a helmet for your flat head when you were one years old
* We went to a sleep clinic and had a 24 EKG done to determine why you NEVER slept!
* We found out you did NOT have seizures which was awesome and mom just needed to let you cry it out! Who knew?!
* You had two surgeries at two years old for undescended testicles (the joy of being born early)
* You started yearly botox injections at 3 years old
* You had major right hip surgery (osteotomy) at 5 years old
* You had right eye (strabismus) surgery at 5 years old
* You had your ASD closure at 7 years old
* You had right hip hardware removed at 7 years old
* You had tendon and tissue releases at 8 years old
We have been surgery free for ALMOST TWO YEARS...which was my goal after three surgeries way too close to each other.
I remember counting how many therapies and appointments you had during your first year of life and it was over 300! I did them all myself and worked part time. I am not sure how I did it on top of never getting any sleep. We made it through your first year and then two and then three and somehow we made it through TEN YEARS!
I have no idea what the next ten years will hold. I am sure there will be more surgeries. I am sure there will be more heartache because I am already aware of two horrific things that are wrong with your body. I can't even think or write about them right now. I tear up instantly and it is your birthday so I am going to be HAPPY!
I think life will get easier as the years go on. Surgeries will not be so frequent. Therapies won't go on forever, at least I don't think they will. One day it will be up to you to get your butt there! HAHA Maybe you will even live on your own one day and get married. If not we have built a house that you can grow old in. We may need to build a handicap kitchen if that is the case but until then I will continue to enjoy my amazing family. I love my life and my children make me extremely happy. My husband is by my side every day and helps me get through the difficult days.
HAPPY BIRTHDAY BRENDAN!! Still can not believe you are TEN!
Monday, November 19, 2012
Parent Teacher Conference
I met Brendan's teachers tonight. I have always been impressed with this school especially since it is public. They really seem to know what they are doing for these special needs kiddos. This year started out a bit rocky. His special needs teacher quit and they took a while getting someone in his classroom...she just started today. However, after today's meeting I feel okay about it. He is able to be with his typical peers for morning work, social studies and science. Today I found out his favorite subject is Science and that he LISTENS and ANSWERS questions in class appropriately. The teacher wants him in the typical classroom more often because some of the other kids in his special needs class are not verbal and she feels Brendan needs more interaction with his peers. I already LOVE HER! She is looking out for my son and sees that he is smart even though he doesn't always come across that way. She knows he can't write or read but he can comprehend and be still be an involved student. It was great to hear positive things and a bit shocking I must admit that he can answer questions correctly. I think the ADHD medication is really helping him concentrate during school. Medicating your child is always a difficult decision but we definitely made the right one. He has learned more in the past two years than the first 5 years. I am one proud mama tonight! She also mentioned the kids are great at helping Brendan when the teacher is busy with other students and he works well in a group for science projects. I wasn't surprised to hear this because most kids seem to love him.
Saturday, November 17, 2012
I dreamt that Brendan walked....again
I have these dreams occasionally. They are bittersweet. I never really see Brendan upright without equipment so it is unusual to see him in this stature. I am not even sure he really looks like him in my dreams. It is almost impossible to picture what he would look like standing and walking. His PASS worker has been practicing with him lately to stand up without holding onto anything. She kneels and he stands facing her with his hands on her shoulders. When he is ready he lets go. He does not last very long but it is a start. Something he could never do before. Confidence is a huge issue for some reason. He doesn't think he can do it so we tell him to say "I can do it" to help him feel more confident. I think it is helping because I saw him stand and it was for at least a good solid second. Yes just one second...doesn't that sound strange? It was really exciting to see and I feel like just maybe one day he will stand for 5 seconds and then 10 and then who knows how long! Life would be much easier if he could just stand. He doesn't have to walk but just to be able to stand up when need be would be very helpful for everyone. When he does things like this I dream big. I dream that he walks. He walked funny in my dream, kind of hunched over and fast! I remember the feeling of excitement I had and how proud I was of him. I hope one day we can experience this but until then I will count the seconds that he lets go of someone or something and stands all on his own! It only took him 10 years :)
Thursday, October 25, 2012
It's the little things...
Last night Brendan and his 5 year old sister had a wrestling match. It was really funny to watch. Brendan worked really hard and had a blast. He didn't want it to end and kept yelling one more time, one more time! He even took his sister down a few times. While this may seem like nothing for many kids it is huge for Brendan. It took a lot of effort but he really enjoyed it. Once again therapy and play rolled into one!
I still get sad from time to time when I think about his struggle in life but that is only when he is not in front of me because when he is he doesn't let you feel sad. He is ALWAYS happy, smiling, laughing and just enjoying life. He cracks me up daily. The wheelchair has become part of him. It is his legs and he is fine with that, at least that is what it seems. He wheels around this house like a pro. I hardly yell at him for wheeling into walls anymore.
Brendan is going to be Bounty Hunter for Halloween. He has been batman for 4 years so I really happy he wanted to be something else. We had to be creative and make his costume which was actually kind of fun. It may seem like an odd costume for a child but he absolutely loves that show. He know the lingo and probably every episode by heart. He doesn't watch much television but has two favorite shows, ICarly and Bounty Hunter.
It is great to see him progressing in little ways. His pretend play has really progressed this past year. He can even entertain himself in his room with his tool bench. This has been a goal for so many years and he has finally met it! He achieves so many things and although they may take months or years while it only takes days for other kids his age he does it which makes one proud mama! Brendan is an inspiration, he truly is!
Saturday, October 20, 2012
My boys and My girls
I love being able to say 'my boys' now. We have always referred to Chloe and Makayla as 'the girls' and since I always pictured myself having 3 boys it is nice to finally say 'my boys'. What I love most about Brendan is his lack of self pity. He does not have a jealous bone in his body. He loved watching Makayla meet all her milestones over the past 5 years and now he already loves watching Drew smile, talk, and just be a baby. He has nothing but love for his siblings and it makes you feel like you are doing something right. I enjoy listening and watching all of our children interact with each other. We have a very close family even though we aren't all 100% blood related. The kids would never think of each other anything but brothers and sisters and I love that.
Chloe has started gymnastics and is amazing at it! She was the best in her class and she just started. She has self taught herself cartwheels, one handed cartwheels, round offs, and the splits. She practices all the time and has really perfected her skills in mere months. We were able to view her class last week and we are amazed. The teacher wants to move her up a level already. Now we just need to afford it but how can you not try when you find a natural talent in your child. We need to enroll Makayla in dance class because this child has danced since she was an infant. She can't even help herself. If music comes on that child is dancing and she has moves! She can feel the beat and dance to all kinds of music and we love watching her.
Time for some coffee and get these kids ready to head to the shop! Our consignment shop is going well and I think we are finally going to take Sunday's off! If you ever want to check out pictures of what we have ( we can ship items!) check out our facebook page www.facebook.com/tivertontots. I have shipped two items already to children with special needs. Everyday baby gear that can make our lives easier.
Sunday, October 7, 2012
Brendan is always progressing! Drew is 7 weeks already!
Brendan never stops progressing and for that I am forever thankful. He is really growing up on me. He will be the big 10 NEXT MONTH and I see a major difference from last year. He has been paying a lot more attention to movies. We have 'family fun Friday movie night' and a year ago Brendan would talk through the whole movie and not even watch it. Last weekend we watched Garfield and he was quiet and was watching the t.v. the entire movie! I was shocked. He recently told me he saw Diary of a Wimpy Kid and it was funny and we should watch it. Who is this child?! He is growing so much and is so heavy. I lost some of my muscles from not lifting him during my pregnancy and for a few weeks afterwards. I can barely move him now. Just getting him from his bed to his wheelchair takes effort. He outgrew all his size 6 pants over the summer so I think he had a growth spurt. I love watching him grow up but it also scares me because I never thought I would already be at the point of wondering how much longer I will be able to lift him. I knew this day would come but I didn't think it would come so soon. This is where being 5'1" is not a good thing. Does anyone else worry about this? Maybe we will just always be able to lift them from shear determination?
Drew is already 7 weeks old...where did the time go? The days do not stop. We are busy busy busy. The house is very hectic but Drew fits right in. He likes the craziness all around him. Working has been difficult with him. He doesn't sleep as much as I thought he would and has been crying a lot. We bought some gas drops and he had a great day at work yesterday so maybe that was the issue. It is a bit strange having a boy that is developing normally. He is smiling, cooing, making eye contact and is a great addition to our loving family.
Thursday, September 13, 2012
Baby Drew is here and already 4 weeks!
My life has been crazy~in a good way! 4 weeks has absolutely flown by. I surprised myself and adjusted immediately. I wasn't sure how having a newborn would be with my youngest practically 5 years old but I guess parenthood is like riding a bike...you never forget. I really enjoy it, more than I thought I would. I think I am treasuring every moment because I know he is my last. This is really my last baby and it is somewhat bittersweet. He was wanted for years and he is finally here after a horrible pregnancy. I feel very fortunate to have made it 38 weeks and to hold him in my arms when I know not everyone gets that dream fulfilled.
Drew fits right into our family. I am so in love with my little guy. He is a really good baby. He came into this world on August 16th at 3:35pm and was 7lbs 14 ounces!! Labor wasn't all that bad because I got the epidural. I was in so much pain already at 3cm and I hit 6cm fast and furiously. Delivery was a great experience. The Dr. was so busy delivering other babies that a midwife delivered him and we did delayed cord clamping...something I had researched and really wanted. We got to bond with Drew for a long time before they took him away to do anything. It was very special and am so happy I was able to experience it.
I am pretty sure he is already over 10lbs now, he eats like a champ. He is going to follow suit and become super chubby like the other kids at a few months old. The kids absolutely adore him and are very helpful.
I will try and blog more but between the family business and having 4 children (still sounds crazy to me!) I have little time for myself. I am pretty much non stop from morning til night but in a weird way I love it!
Interesting little fact: All of my children were born on a Thursday afternoon. I just think that is neat. Makayla and Drew were born within minutes of each other.
Thursday, July 26, 2012
Still pregnant!
Well I have had a ton of contractions but so far no arrival. 31 days or less and I can not wait. I am all belly and he is killing me with his kicks and movements. I have a beach ball inside of me and let me tell you it is not comfortable!
Brendan's addition is nearly complete. The wood floors were just finished so we can't go in the area for a few days. Minor details are left and then he can actually use it!!!! This project started back in October so I am very excited to get my house back. I can't wait for him to pick out everything for his new room. I am ready to get his therapy room together and not have contractors at my house at 7am. Should be perfect timing for the arrival of this little one.
Brendan is doing awesome lately. He is growing up by the week it seems. His sentence structure and thought process for what he says is constantly improving. The summer is flying by and between opening the business and being super pregnant I haven't had time to enjoy it. I love the Fall anyway so I am looking forward to some cool weather and lots of walks with the kids.
Can't wait to post pictures of the completed addition and our new bundle of joy.
Monday, July 16, 2012
Contractions Contractions Contractions
Like clockwork I had contractions last night. I just turned 34 weeks on Sunday. I delivered Brendan at 33 weeks and had preterm contractions with Makayla at 33 and 34 weeks. I got a bit nervous. I have been so uncomfortable and keep saying I hope he comes a little early but 34 weeks is a bit too early. I don't want a NICU baby. I want a healthy baby that comes home with me. They lasted from 2:30am-7:30am and were 6 min apart for the last hour which almost had me going to the hospital but somehow I ended up falling asleep and they slowed and stopped. Not sure if they will stay away or not but every day counts. If it happens again and they don't stop within an hour I have to go in to get checked out. I guess those weekly shots I have endured since week 16 aren't going to work for me. BOO
Thursday, July 12, 2012
Life has been BUSY! Update on life
I have been beyond busy lately. Opening your own business 8 months pregnant has been a challenge but we are doing it! We work 7 days a week right now but things are going well. I think we had the right idea for our area. Word is spreading and we have had a lot of business. We haven't spent any money on advertising yet but between facebook, craigslist, drive-by's, and word of mouth we have been doing alright!
I am already 33 weeks pregnant! This has been a very difficult pregnancy. It hasn't gotten any easier let me tell you. He is already 5lbs and kicking my butt. My stomach is the biggest it has ever gotten with any pregnancy which scares me because I still have 7 weeks to go. He is very active and likes his space. I am hoping he comes a little early because I am so uncomfortable. I can't bend over, I can't walk for very long, I can't stand for very long....the complaints go on and on :). It will be all worth it. I can't wait to meet him. My sister had her baby boy 4 weeks early so he has already arrived. I was holding him and just can't imagine that baby fitting inside of me but he is only 6lbs 3 ounces so it would be possible.
Brendan's addition is ALMOST finished!!! I can't wait. His bathroom is just about done. The plumbers and electricians are supposed to come tomorrow and finish up and then the hard wood floors have to be finished and all that will be left are final details. He is so excited to sleep in his new bedroom. His custom made vanity was just installed this past weekend. I will take some new pictures soon. It all looks amazing and I can't wait for him to settle in.
His equipment I ordered also came in on Friday. He loves his dynamic stander and wheels to go get the mail everyday. We also have a new kaye bench and wheelchair desk. The lift in the garage was also installed recently but we haven't used it much because his temporary bedroom doesn't allow him to fit through the door into that room yet. It is all coming together and has been a very long process but will be so worth it.
I will have to post videos and pictures soon!
Saturday, May 26, 2012
Tiverton Tots is open
WE officially opened our consignment store. My husband worked very hard and got the store ready to open in 8 days....which included a lot of painting, putting up all the clothes hangers, painting a floor, putting down carpet, and putting together our counter. He rocked it. I stayed busy doing inventory. We have been open for 3 days and have sold items every single day. More than expected actually. We haven't really advertised yet besides craigslist and facebook and so far those seem to just bring in the consignors. Almost all sales have been from drive-by's. It is exhausting but I am enjoying it. My husband is home a lot more with us which is really nice. He is non stop lately and just cleared out the room for the baby and set up the crib. We still need to paint it but everything is ready in case he makes an early arrival. We have been so busy with the shop that I haven't had time to think about it. I realized I am 27 weeks and we should start preparing.
So far all is going well. I still get weekly injections to prevent preterm labor. I have had 11 so far and I don't enjoy them but they aren't nearly as bad as I had feared. I am feeling uncomfortable and have every symptom in the book but am chugging along. Time is flying by and being so busy is helping. I am not sure I am ready for #4 or to carry a carseat everywhere I go or to stop what I am doing and breastfeed every 3 hours but soon enough that will be part of my life again. I am sure I will adjust quickly. I can't wait to see what Drew looks like and how he will fit into our amazing little family. The kids really enjoy my belly and my youngest saw my belly move and felt a kick for her first time yesterday. She thought it was pretty neat.
Thursday, May 17, 2012
Botox Tuesday ~ Vision function ~ My thoughts
Brendan has Botox injections in his legs and right arm on Tuesday. The sad part is it doesn't even phase me anymore. He has been through so much that Botox is nothing anymore. I will be worried that day since he does get put under and I know something can always go wrong but I don't stress for weeks beforehand anymore. I don't dwell on it. It is just something that has to be done and we will get through it. I know he will throw up afterwards and most likely in the van like every other time :). I will have a bucket ready and I know he will actually tell me he has to throw up now and there is an 80% chance he will get it in the bucket!!
I am so thankful for the fact that Brendan hasn't had to have Botox since October 2010!!! Thanks to PERCS he has been doing great and hasn't needed it. He is getting a little tight and we are doing it basically for 'maintanence'. He is still doing great and walks flat footed with his left but has resumed some toeing with his right. I still believe PERCS was the most productive surgery he has ever had and has given him the best advantage to overcome his tone.
He actually has leg muscles in BOTH calves. He is able to pedal his bike on his own for long distances and use his muscles more when he walks. I honestly NEVER thought I would see a calf muscle on this child and he has them! I will try and take a picture...they are so small but when I first noticed one on his left leg I actually thought something was wrong and he had a swollen leg. All the sudden I realized.... OMG THIS IS A MUSCLE!!! I couldn't believe it.
He is turning 10 this year and I can't believe it. One on hand I think where has the past 10 years gone and on the other hand I think of how much we have been through together over the past 10 years and wonder how I have gotten through it all. He is doing so well and has come so far and I am so thankful. He is such an amazing little boy and I always say that but it is true. He doesn't care that he has a disability or that he has to use a wheelchair. He doesn't care that his sisters can get up and run around. He is okay with who he is and that makes life so much easier. He could barely speak at 5 years old and now he is talking with complete sentences and using more vocabulary every day.
Bren had a vision anaylsis done at school again. As a reminder he has cortical visual impairment which basically means his brain damage causes his brain to not perceive images like it should. He was basically blind as an infant and on a scale of 1-10 for CVI he was at a 1. Today he is at a 9/10!!! Isn't that amazing?! This proves the brain is always repairing itself and he is STILL progressing. The specialist saw major improvements since she evaluated him 2 years ago. She seemed surprised he is functionally at such a high level. He still has some issues with his right peripheral vision so I need to find out what is causing that because she didn't seem to think it was CVI related.
The worry never ends, the appointments never end, the therapies never stop, but over time the anxiety lessens, the saddness fades, and the acceptance of it all sets in. This is my life. I have a disabled child. I have a handicap accessible vehicle. I had to renovate my house for my child to be able to live independantly in and I have 100 more things to do than most parents but I can do it all and I do. I continue to live my life and fulfill my dreams and raise my children to the best that I can. I can look back and see how much we have all overcome and feel proud of everything we have gotten through together. There is still more to come and some of it I am not ready for but at least I know I will make it through this difficult journey in life and my son will be there right by my side with an amazing attitude about his life.
Tuesday, May 15, 2012
We have the keys! Brendan emailed ICarly
The store is offically ours! We started painting today. We are going to paint the wood floors....very old wood floors....and put carpet in half of the store. We are painting the ceiling and walls and then will hang the clothing rods. I can't wait to start setting up and see the huge transformation. The store was a WRECK before we rented it.
Brendan has been asking to email ICarly for a few days now so I looked up an address for him tonight so he could email her. I hope he gets a response. He absolutely loves that show. He doesn't really watch much television, never has but will watch this show daily. He begs his sisters to constantly watch ICarly in the van.
Thank you for the support on our crazy adventure. We hope to open as soon as possible....I get tired easily so my husband has a lot of work to do but I tried helping today as much as I could. I ran to the store for him a few times and brought him coffee :). I painted some trim but moving and bending with this ginormous belly is far from easy. Thank goodness I have an amazing husband who tells me to go home and rest.
Friday, May 11, 2012
Feeling proud of myself....for once!!
Today I felt proud of myself. Proud that I am starting a business while 6 months pregnant. Proud that we are going through with a plan and a dream. I think it is on our blood. My husband's father owned his own business and they started it when his mom was pregnant with him. My father never like working for people and he owned his own business. I know our family thinks we are bit crazy but it is our life and the chance we are taking. I would rather more support but I am used to it. We will just have to show everyone we weren't crazy or stupid and make it work!
It is stressful and exhausting but I have been working as much as I can while the kids are in school. My 4 year old has been great and lets me get a lot done. We have over 1000 items for our store already and we aren't even open yet. We just need the people to come and shop and buy all these things! I really hope it works out but if it does not I will persevere and try something else.
It will certainly be interesting with a newborn and three other kids to care for but I think it is right for our family. We love being together and I don't think the kids will mind coming to the store. Maybe in a few years they will be helping us out! We hope this is our family business for years to come and we can expand and possibly have two stores. Go Big is what they say...right?!
Well I am off to the Doctor for my #.....I lost count.....injection to keep this baby cooking for as long as possible. Soon enough we can guess an arrival date! I am hoping for July 28th. I know it is a bit early but both girls were born on the 20th and it would be really neat if both boys were born on the 28th! I guess I shouldn't hope to deliver 4 weeks early but I am already getting uncomfortable. I think he will be a big boy. He is crazy at night so I already know I won't be in bed before 11pm when he arrives. I can't wait to meet him, he is so special to me. He is the baby I never thought I would have. His pregnancy has been far from easy. I still get nauseous and I am already almost 25 weeks but that is what boys do to me. I don't react well to their hormones or something. It will all be worth it to hold him in my arms and to think how much he was wanted and how many years it took for him to bless us with his life.
4 kids....wow!!! That is a lot but I love my big family and I am so happy that Brendan has a bunch of siblings that love him for who he is. My stepdaughter said to him... "Brendan you aren't handicap you are handicapable!"....best quote ever.
Thursday, May 3, 2012
'He' is still a boy!
I had another ultrasound today to check on growth, the placenta, and the fluid level. Everything looked perfect. He weighs 1lb. 5oz already. He was so cute to watch. He kept his arms near his head and his hands near his little face. I was a little worried he was sucking his thumb but he wasn't. He just had them near his nose and cheeks. He was moving all around and at one point he had his legs above his head. He is an acrobat already! It was a nice morning after my stressful night. I am so happy he seems healthy and happy. It will be strange to have a 'typical' boy. I can't really picture it. The girls keep asking if this baby will be disabled and comment that they don't want two disabled brothers. I understand there concerns and I can't say for sure he will be healthy but we all hope so!
I love him already!! I can't wait to meet him.
Sorry been MIA. Left Hip Subluxation & Everything in between...
Sorry I have been MIA. Life has been very hectic being pregnant, just being a mom, and starting up this business. Some days I wear myself out. Some days I feel great and can be very productive and other days I don't feel well due to just being pregnant and can't get as much as I want done. I get frustrated when I can't physically do everything I want to do but I know I need to keep this baby safe so I try and rest. I can do some things from my bed which is nice but then I feel guilty as a mom that my 4 year old watches t.v. and colors while I work on the business.
It is fun getting it up and ready but there are days when I am stressed. I am starting to get nervous about actually opening. We have never done this before. This is a totally new experience. My husband is quitting his job and we are going all out to do this and do it right. It is defintely a work in progress but check out Tivertontots.com. I have also started a facebook page, just type in Tivertontots in the search bar. Like my page to spread the word, in this small world you never know who could live just around the corner from our store.
Okay on to the serious stuff that I don't feel like talking about. I had one worry free year for my son. After PERCS I could focus on how much he has improved and how beneficial that one surgery was. I was on cloud 9 for once with my son. It wasn't an easy year by far suffering multiple miscarriages and watching my father die from cancer. It was actually a pretty horrible year but at least on top of it all my son was doing okay. This year is a whole knew story. I am brought back to when he was 2 years old and all I received was devestating news from every Dr. he saw. Yesterday we saw a new orthopedic. I can't take Boston trips anymore and I had lost some trust in his Dr. which is never good. The Dr. was great. He was very personable and he drew out Brendan's amazing personality. They were both punks and it was pretty amusing to watch. The Dr. left saying Brendan had one of the best personalities he has ever seen. This made me proud. I want my son to have an amazing personality because that is what will get him somewhere in this world. Anyway, x-rays were of course the major point of this appointment. His hip and spine were taken and I have been dreading seeing the images for days. On a great note his spine showed ZERO signs of scoliosis. I was very relieved to here this because at a previous scan I was told he had a slight curve. Instantly images of a steel rod being surgically placed down his spine filled my worrisome brain. I get to put those images out of my mind for now. Prior to the good news I was shown his hips. His right hip looks amazing. After right hip osteotomy it should but since his hardware was removed I of course worried it could slip out of place with his tone. It didn't, it looked all perfect sitting in his hip socket. His left hip looked a little out of wack but at first he said it looked alright but then he did some measurements on the screen. I have no idea what he was doing but in the end he said it is subluxing and he mentioned the most dreaded word regarding Brendan's hip......SURGERY! I am not exactly sure I am strong enough to go through another hip osteotomy. It was the worst surgery we have been through. It took around 10 hours, he had to have a blood transfusion, I was wake for over 24 hours because he couldn't sleep and kept talking to me the entire night. He was in the hospital for 5 nights, he was in a lot of pain for the first week and kept waking up at night screaming in pain. He was casted from his mid belly to his toes for 6 long weeks. He only weighed 27 lbs then and he now weighs 50. I don't even want to think about this surgery. The months of stress beforehand. The sleepless night before the surgery because I knew he could potentially die during it. The months of recovery. The pain he endured healing. The 2nd surgery to remove hardware that could cause major infection. The tape accidentally left on his leg that ripped his skin dry when they removed the cast. All of these memories creep their way back into my brain and I want to say NO, I don't want him to go through this again. But the other part of me knows I have to do it if they say he needs it. I cry as I think about it, I cry as I type all of this because days like these are why it is so difficult having a disabled child. It can be heartbreaking watching them endure all of these surgeries. I cried if front of 5 people yesterday when he just mentioned we had to watch his hip. I can blame being pregnant but I am almost 100% positive I would have cried even if I wasn't. I have cried many times before hearing news I knew was coming but did not want to hear in his lifetime.
So basically we are 'watching' his hip. He will have a repeat x-ray in 6 months of his hips. He has Botox on May 22nd and the Dr. said that may relax it enough that we just 'watch' it for another 6 months. It is a waiting game, one that I want no part in.
I think one other thing that has been on my mind the past few days is the loss of a local man who had CP. He was 40 and has run, well by running I mean pushing himself in this wheelchair/bike backwards with his big toe, 52 marathons. He was such an inspiration and I never had the privilege to know about him until he recently passed. He died after choking. He was without oxygen for too long and suffered brain damage. They had to take him off life support and he passed away. This hit home hard for me. You don't want to think our child's life expectancy is effected but this can happen and it does. Brendan chokes all the time but he somehow has this inhumane reflex and gets the food back up and out. I have raced to him before at the dinner table but never have had to give him the heimlich. What if one day he is living on his own and I am not there to help him when he needs it??? I know that is in the distant future but stories like the loss of this amazing person effect me more than I even know. RIP Jason Pisano.
I wonder why I have so many grey hairs at 32 years old. I wonder why I can stay thin and eat whatever I want. It is called stress. Oh the loving word. It is just part of having a child with Cerebral Palsy or with any other disability. It just comes with the territory. Thank goodness for his amazing personality and being a punk with the Dr. and making me laugh. Laughter is a stress reliever. I love you buddy but I wish life was easier for the both of us.
Sorry for the length I have a lot on my mind. It is a rainy day and I am emotional. Life as a mom to a child with CP in full effect.
Tuesday, April 10, 2012
Half way there! Opening a business :0
I am 20 weeks (well this past Saturday I turned 20 weeks) and am thankful to be half way there. I am hoping the rest of the pregnancy is uneventful and passes by quickly. I think it will since we seem to be busy all the time. The first 20 weeks flew by and I was sick for most of it so if that can feel quick feeling good should feel even quicker.
Am I ready for a summer baby to be born with 3 kids at home with me??? Not really.... but I have no choice in the matter so I am going to just NOT think about it and just do it. My husband is going to take a week off.... if he is still working where he is. B U T
We are planning to open our own children's consignment store. We have talked about opening our own business together for years. We have thought of a bakery/cafe called Muffin Madness, and a restaurant delivery company called Dine-In Delivery but we have never followed through. This time we don't want to give up on our dream. My husband can't really stand his job, well it isn't so much his job, it is the fact that he is gone for 12+ hours a day and doesn't get much family time. He really enjoys being with us! Isn't that nice?
After we had our 20 week ultrasond and found out we really do have a baby boy growing we continued on having a great day. Life hasn't been so easy lately. My husband is dealing with a lot of 'not so fun' stuff with his x girlfriend, the mother of my stepdaughter. She basically wants full custody so she can take our money, little does she know we don't have any! We have 50% custody and placement right now and have her 50% of the time, sometimes more. I really hope the judge sees right through her! Anyway.....as I was saying
Thursday was a great day. We found out we have do indeed have a boy (I knew it all along!) and then we went to sign paperwork for our grant so we can finish Brendan's addition. Then we drove around and found the PERFECT spot for our store. Well we hope it is perfect. Rent is cheap but we aren't sure if business's always last there but it is worth a shot. It is right in our own town and on the main road. It is store front with big glass windows and the perfect size to start up. Did I mention the rent is just right??? We are going to gamble but it is exciting. A bit crazy being 20 weeks pregnant but hey, this is how we roll. How can we not follow through with this dream? It was a perfect day and somehow we ended up at this location and somehow the lady across the street was the property manager and let us in to see it right on the spot. It feels like destiny.
I have been thinking about opening a consignment store for years and we are used to living on one income right now so it shouldn't be too shocking for my husband to join me on this business adventure. Being all pregnant I need him. He might do a paper route or something at first to help pay the bills while we get started. It is very exciting and feels very real. We are doing lots of research and budgeting and we are in the works on reserving the building. Wish us luck!
Am I ready for a summer baby to be born with 3 kids at home with me??? Not really.... but I have no choice in the matter so I am going to just NOT think about it and just do it. My husband is going to take a week off.... if he is still working where he is. B U T
We are planning to open our own children's consignment store. We have talked about opening our own business together for years. We have thought of a bakery/cafe called Muffin Madness, and a restaurant delivery company called Dine-In Delivery but we have never followed through. This time we don't want to give up on our dream. My husband can't really stand his job, well it isn't so much his job, it is the fact that he is gone for 12+ hours a day and doesn't get much family time. He really enjoys being with us! Isn't that nice?
After we had our 20 week ultrasond and found out we really do have a baby boy growing we continued on having a great day. Life hasn't been so easy lately. My husband is dealing with a lot of 'not so fun' stuff with his x girlfriend, the mother of my stepdaughter. She basically wants full custody so she can take our money, little does she know we don't have any! We have 50% custody and placement right now and have her 50% of the time, sometimes more. I really hope the judge sees right through her! Anyway.....as I was saying
Thursday was a great day. We found out we have do indeed have a boy (I knew it all along!) and then we went to sign paperwork for our grant so we can finish Brendan's addition. Then we drove around and found the PERFECT spot for our store. Well we hope it is perfect. Rent is cheap but we aren't sure if business's always last there but it is worth a shot. It is right in our own town and on the main road. It is store front with big glass windows and the perfect size to start up. Did I mention the rent is just right??? We are going to gamble but it is exciting. A bit crazy being 20 weeks pregnant but hey, this is how we roll. How can we not follow through with this dream? It was a perfect day and somehow we ended up at this location and somehow the lady across the street was the property manager and let us in to see it right on the spot. It feels like destiny.
I have been thinking about opening a consignment store for years and we are used to living on one income right now so it shouldn't be too shocking for my husband to join me on this business adventure. Being all pregnant I need him. He might do a paper route or something at first to help pay the bills while we get started. It is very exciting and feels very real. We are doing lots of research and budgeting and we are in the works on reserving the building. Wish us luck!
Thursday, April 5, 2012
It is a healthy Bouncing Baby.................................
B O Y !!!!!!!!!!!!!!
We are super excited. I knew it all along. :) We can carry on my husbands last name and complete our family. 4 kids 2 boys and 2 girls. Perfection!
We are super excited. I knew it all along. :) We can carry on my husbands last name and complete our family. 4 kids 2 boys and 2 girls. Perfection!
Wednesday, April 4, 2012
14 1/5 hours to go!!! I am a little excited
I have been anxious all day. I had to clean my house to keep my mind occupied. I seriously can not wait to see my little baby. It has been 8 weeks since I have had an ultrasound. I am anxious to know if he/she is healthy and of course if it is a HE or a SHE!!!!! I can't believe it is tomorrow. AHHHHHH
Brendan's has an enlarged aorta. Also known as a dilated aorta. I am doing a little better today about it. I know I really can't worry daily for a whole year to see what next year's echo will tell me. I know they don't do surgery until the hole is a certain size. I know he at the moment his heart is pumping well. I just have to focus on all of that and the new addition in our lives. I can't constantly fear what his future holds. I need to take it day by day like I always try and do.
If you want to know more here is a link: http://www.wisegeek.com/what-is-an-enlarged-aorta.htm
I can't keep dwelling on it so I am trying to put it out of my mind until next April. Maybe his angels up in heaven can hear some prayers and heal his heart.
Brendan's has an enlarged aorta. Also known as a dilated aorta. I am doing a little better today about it. I know I really can't worry daily for a whole year to see what next year's echo will tell me. I know they don't do surgery until the hole is a certain size. I know he at the moment his heart is pumping well. I just have to focus on all of that and the new addition in our lives. I can't constantly fear what his future holds. I need to take it day by day like I always try and do.
If you want to know more here is a link: http://www.wisegeek.com/what-is-an-enlarged-aorta.htm
I can't keep dwelling on it so I am trying to put it out of my mind until next April. Maybe his angels up in heaven can hear some prayers and heal his heart.
Tuesday, April 3, 2012
2 More Days!!!
The month has flown by even counting down the days. We finally have our anatomy scan on Thursday and hopefully can find out the gender. I think I might cry if the baby doesn't cooperate. I am a little nervous and hope the baby is healthy. We have been through a lot lately just dealing with life and I need a healthy baby to look forward too.
Brendan saw his cardiologist yesterday. His device that closed his ASD has healed nicely and tissue has grown over it. His heart is pumping nicely. He is only 47 lbs!! This kid needs to grow but on the other hand I don't mind him being so little.
We got some disheartening news about his heart but I don't feel like discussing it right now. I don't want my mom to know with everything we have been through with my dad so we are pretty much keeping it to ourselves. It isn't a 'problem' as of yet but something we have to watch every year and it could become a very big problem and I am scared. :( I am sad and I am worried. I just pray this last baby is healthy because I can't handle much more. I am already tearing up for the 4th time today just thinking about the unkown future for my dear son. I wish I could take away all his pain and all that he has gone through and still has to face. I am so thankful he is oblivious and happy.
Brendan saw his cardiologist yesterday. His device that closed his ASD has healed nicely and tissue has grown over it. His heart is pumping nicely. He is only 47 lbs!! This kid needs to grow but on the other hand I don't mind him being so little.
We got some disheartening news about his heart but I don't feel like discussing it right now. I don't want my mom to know with everything we have been through with my dad so we are pretty much keeping it to ourselves. It isn't a 'problem' as of yet but something we have to watch every year and it could become a very big problem and I am scared. :( I am sad and I am worried. I just pray this last baby is healthy because I can't handle much more. I am already tearing up for the 4th time today just thinking about the unkown future for my dear son. I wish I could take away all his pain and all that he has gone through and still has to face. I am so thankful he is oblivious and happy.
Friday, March 23, 2012
Brendan has a leg muscle!!!!
OH My Goodness Brendan has his very first calf muscle on his left leg. He has been riding his bike almost daily and is getting pretty good at it. He is peddling himself almost the entire time now and results are being seen! Unfortunately his right leg is looking smaller all the way around compared to his left which is his dominant side but I am so thrilled to see a muscle. I know this is partly due to PERCS allowing him to use his muscle and not the tone. He couldn't even pedle his bike prior to the surgery. I am on cloud 9 from one tiny calf muscle!
It is the little thiings......
Check out Freedom Concepts if you are interested in a handicap accessible bike. He is obsessed with it right now.
It is the little thiings......
Check out Freedom Concepts if you are interested in a handicap accessible bike. He is obsessed with it right now.
Wednesday, March 21, 2012
Bought the first baby items! Great deals this week!!
I just scored at Babies R Us. I was afraid to buy things too early but I couldn't resist. I had a 25% off clearance items coupon so I went to check it out. They had the sit and stand stroller I have had my eye on for $50! We saw it at Target for $150. I grabbed that and saw a chicco infant carrier for $80 so after I talked to my mom and husband I decided to grab it lol. I only spent $103 on both items after the coupon. It was an awesome deal. I even got to make sure the car seat fit in the van with the girls booster seats and everything fits! It feels very real now.
I also stopped at Target and only spent $9.59. I bought a 50 pack of huggies diapers ($6), got 4 free nail clippers, 2 free maybeline lip balm, 2 bags of starburst jellybeans (my favorite) for $1 each, and two 12.5 oz boxes of dog treats for a $.82 each. Great deals just with coupoons. The diapers before coupons cost $9.49 so I basically got everything else for free. :) My kind of shopping.
I am still feeling pretty good. The injection kicked my butt for a few days and made me have a super emotional day but it only hurt for 3 days so at least I get a pain free bottom until tomorrow. 20 more injections to go but if it prevents me from having a perterm baby I am on board. I seriously can not imagine having a baby in the NICU with 3 children at home.
We are starting to think about delivery day. We have nobody to watch Brendan. This baby is coming in the summer time which means all the kids will be home. The girls are easy and will go with anyone but Brendan being so heavy can not. If the baby comes on the weekend it won't be a big deal since my SIL can take him but if I go into labor during the week which is more likely to happen then we have no idea what to do. I am going to have to ask my x husband to take a day off from work and take Brendan. He did meet me at the hospital when Makayla was coming and took him but he could go to school so it wasn't that bad. Oh well. Such is life. Once again making me realize that having a disabled child does make life more difficult.
PASS is going great! Brendan is loving this weather and wearing himself out on his power wheels, bicycle, and walker. He is getting a ton of exercise and loving life. I am so thankful it all worked out when it did because being pregnant and having some issues to deal with already wouldn't allow me to walk so much with him so he could enjoy the outdoors. I am feeling pretty fortunate right now.
I also stopped at Target and only spent $9.59. I bought a 50 pack of huggies diapers ($6), got 4 free nail clippers, 2 free maybeline lip balm, 2 bags of starburst jellybeans (my favorite) for $1 each, and two 12.5 oz boxes of dog treats for a $.82 each. Great deals just with coupoons. The diapers before coupons cost $9.49 so I basically got everything else for free. :) My kind of shopping.
I am still feeling pretty good. The injection kicked my butt for a few days and made me have a super emotional day but it only hurt for 3 days so at least I get a pain free bottom until tomorrow. 20 more injections to go but if it prevents me from having a perterm baby I am on board. I seriously can not imagine having a baby in the NICU with 3 children at home.
We are starting to think about delivery day. We have nobody to watch Brendan. This baby is coming in the summer time which means all the kids will be home. The girls are easy and will go with anyone but Brendan being so heavy can not. If the baby comes on the weekend it won't be a big deal since my SIL can take him but if I go into labor during the week which is more likely to happen then we have no idea what to do. I am going to have to ask my x husband to take a day off from work and take Brendan. He did meet me at the hospital when Makayla was coming and took him but he could go to school so it wasn't that bad. Oh well. Such is life. Once again making me realize that having a disabled child does make life more difficult.
PASS is going great! Brendan is loving this weather and wearing himself out on his power wheels, bicycle, and walker. He is getting a ton of exercise and loving life. I am so thankful it all worked out when it did because being pregnant and having some issues to deal with already wouldn't allow me to walk so much with him so he could enjoy the outdoors. I am feeling pretty fortunate right now.
Monday, March 19, 2012
17 weeks! Loving this weather!
I am already 17 weeks, this pregnancy is flying by. I am feeling pretty good and have some energy. I am able to get out and about and actually keep up with the house. I don't need to nap anymore so I am loving the 2nd trimester....finally!
Could we ask for better weather in March? The kids are outside constantly. Brendan wouldn't come inside today. His aid took him on two bike rides. He refused to come inside until after 5:30 tonight. I think hiring his aid was the best thing I could have done while pregnant because I wouldn't be able to keep up with him right now!
I still was able to make some good deals this week. I only spent $47 at the grocery store and I brought that down from $83. I love saving us money especially being a one income family. It is my contribution in a way to cut our grocery budget down. We used to spend $150 easy a week and now I am staying below $70 most weeks and that includes all household items as well as food. How can you not love that?!
Wednesday, March 14, 2012
New Deals & loving his PASS worker!!
I am finally feeling better!!! The 2nd trimester relief has hit me. I am beyond excited to have some energy back. I hardly feel nauseous and haven't needed a nap in days. So what does that mean??? I was able to coupon again and got some really great deals.
I went to Target and stacked coupons (use target and manufacturer coupon together). I used two coupons on every single item I bought. The total came to $43 and I only spent $11.50. I bought 3 bags of dogfood, 6 boxes of cheese its/crackers, 6 packs of gum, 3 travel size bottles of contact solution, and two boxes of keebler cookies. You can easily spend $3 on one box of cheese its which would have come to $18 just on those so I made out very well!
I went to Stop and Shop yesterday and the total was $198 and I only spent $72!!! I couldn't believe how well I did. I saved $60 JUST in coupons! I bought a ton of stuff even meat and fruit. I am thrilled with my purchases especially spending $70 the past two weeks not using coupons and leaving the store with hardly anything.
Brendan is doing amazing with his PASS worker. He warmed up to her so quickly. He almost never asks me to take him to the bathroom or give him a bath. He lets her do it all. It is so helpful since I am pregnant. I really worry less about hurting the baby. She is great with him and he has a fun filled day from the time he gets off the bus until the time he goes to bed. I am thrilled with my choice and so glad he likes her. The weather has been great and he has been begging to be outside most of the day. He rides his power wheels, bike, walks in his walker. It is so great for him and great for me to not be lifting him. I do feel like I am not being his mother because of how little I have to do. I think it will be even wierder when I am not pregnant but I am sure I can be more involved. I should be able to start going on walks soon. I took a short one the other day and it felt great.
22 Days until the big GENDER REVEAL!!! I can NOT wait!
Wednesday, March 7, 2012
PASS has begun!
Brendan's PASS worker, Michelle, has officially started. Last night was her first night since Monday we had a meeting with the agency. It went very well. Brendan opened up to her right away. He even played a game with her and Makayla while I made dinner and wasn't constantly asking where I was. He acted himself and she did great with him. She hasn't done any of the transferring or lifting yet but hopefully she will soon. I just hope she is comfortable doing it. She seems open to doing everything. She is very patient but already holds him accountable for things and I like that. She makes him say excuse me after he burps..which he does often. He is such a boy.
She is very easy to talk to and get along with. Surprisingly, I don't feel awkward at all having her in my house. She even ate dinner with us. Hoping today goes just as well.
I am looking forward to the next few months getting to know her and seeing how she interacts with Brendan. He is already excited to go somewhere with her. He asked if she will get the handicap pass. He is supposed to go out into the community 2x a month and I think I will be able to trust her in a few weeks. She wants to take him bowling and out for ice cream. He will love all the attention.
The only thing that is difficult is keeping Makayla at bay. She was overbearing with Brendan last night...wanting to do everything for him instead of letting him do his own tasks. Not sure why. Michelle is only here for Brendan which is hard for the girls to understand but hopefully in time they will get bored of her.
I am thrilled this has finally begun. I am getting bigger by the day and it will be great to have someone here to help with the heavy lifting. Everything fell together nicely with this pregnancy. It was really meant to be.
She is very easy to talk to and get along with. Surprisingly, I don't feel awkward at all having her in my house. She even ate dinner with us. Hoping today goes just as well.
I am looking forward to the next few months getting to know her and seeing how she interacts with Brendan. He is already excited to go somewhere with her. He asked if she will get the handicap pass. He is supposed to go out into the community 2x a month and I think I will be able to trust her in a few weeks. She wants to take him bowling and out for ice cream. He will love all the attention.
The only thing that is difficult is keeping Makayla at bay. She was overbearing with Brendan last night...wanting to do everything for him instead of letting him do his own tasks. Not sure why. Michelle is only here for Brendan which is hard for the girls to understand but hopefully in time they will get bored of her.
I am thrilled this has finally begun. I am getting bigger by the day and it will be great to have someone here to help with the heavy lifting. Everything fell together nicely with this pregnancy. It was really meant to be.
Monday, March 5, 2012
Chores!
My husband and I have wrote out a chore list. The kids are 9,7 and 4 and we think it is about time they start helping out a little in this house. It is alot for one person (ME!) to clean up after 5 people day in and day out. They are simple things but they seem excited about it.
How much would you pay your children for chores? I was thinking $2 per week per child. We do not have alot of extra money and that adds up fast each month. We are also thinking of putting Makayla in dance and Chloe in gymnastics so that will eat into our budget as is. We are also thinking of maybe a point system instead. They would earn enough points to buy something special or go on a special outing. Brendan might be more motivated to do chores for a go cart ride vs. getting money.
* Brendan will feed the dog each night and help set the table (with his PASS worker)
* Makayla has to feed the dog each morning and clear the table before dinner. She also has to wipe down the bathroom counters once a week.
* Chloe has to sweep the floors and dust twice a week. She is also supposed to wipe down the counter tops in the kitchen but I am having a hard time finding kid friendly cleaners.
The girls also have to make their beds each morning.
Any thoughts or ideas?
The kids are being great helpers with my pregnancy. They understand I can't do a whole lot right now. They are willing to do more so I can rest. I love them!
How much would you pay your children for chores? I was thinking $2 per week per child. We do not have alot of extra money and that adds up fast each month. We are also thinking of putting Makayla in dance and Chloe in gymnastics so that will eat into our budget as is. We are also thinking of maybe a point system instead. They would earn enough points to buy something special or go on a special outing. Brendan might be more motivated to do chores for a go cart ride vs. getting money.
* Brendan will feed the dog each night and help set the table (with his PASS worker)
* Makayla has to feed the dog each morning and clear the table before dinner. She also has to wipe down the bathroom counters once a week.
* Chloe has to sweep the floors and dust twice a week. She is also supposed to wipe down the counter tops in the kitchen but I am having a hard time finding kid friendly cleaners.
The girls also have to make their beds each morning.
Any thoughts or ideas?
The kids are being great helpers with my pregnancy. They understand I can't do a whole lot right now. They are willing to do more so I can rest. I love them!
Friday, March 2, 2012
ANNOYED!!! Neuro apt update and......
I am beyond annoyed today. I called the medical equipment company to check on everything I had ordered back in OCTOBER! The woman who answers starts to apologize over and over and said they had his file in the wrong pile and just submitted the paperwork to his therapist to get it signed off on. Basically it is like I just ordered this equipment this week not 5 months ago. I am so upset. I made sure I ordered everything so he would have it when his therapy room was built and now I am sure I won't be seeing anything for months afterwards. Everyone seems so incompetent lately.
Brendan had his two hour neurology appointment. Gotta love when Dr.'s can't stay on their time slots but I do really like her so I won't complain too much. I am used to it anyway. I figured we would be there until 6pm and we were. She said he still looks really good but would like to do some botox in May. She wants to see what his new orthopedic thinks first. I really don't think he needs it. Not sure what to do. Sometimes it seems Dr.'s just want to do things that aren't completely necessary. She said it was basically upkeep and would help him a little. Any advice?
The anatomy scan is scheduled! BUT not until April 5th which feels like an eternity. I have 5 weeks before I find out if I am right and this is a boy. I am having a difficult time lately with pain. I found out I have a uterine prolapse. I can only stand for a few minutes before I have major pain. It is hard to get anything done around the house. I am really fearing the summer now with 3 kids at home. I am just hoping I don't get put on bed rest because of this.
The PASS woker is almost ready to start. I have a meeting on Monday with the agency and my PASS worker and then we should be good to go. I am beyond ready!
Brendan had his two hour neurology appointment. Gotta love when Dr.'s can't stay on their time slots but I do really like her so I won't complain too much. I am used to it anyway. I figured we would be there until 6pm and we were. She said he still looks really good but would like to do some botox in May. She wants to see what his new orthopedic thinks first. I really don't think he needs it. Not sure what to do. Sometimes it seems Dr.'s just want to do things that aren't completely necessary. She said it was basically upkeep and would help him a little. Any advice?
The anatomy scan is scheduled! BUT not until April 5th which feels like an eternity. I have 5 weeks before I find out if I am right and this is a boy. I am having a difficult time lately with pain. I found out I have a uterine prolapse. I can only stand for a few minutes before I have major pain. It is hard to get anything done around the house. I am really fearing the summer now with 3 kids at home. I am just hoping I don't get put on bed rest because of this.
The PASS woker is almost ready to start. I have a meeting on Monday with the agency and my PASS worker and then we should be good to go. I am beyond ready!
Wednesday, February 29, 2012
Picture Day! I am huge!
We are leaving soon for Makayla's pictures. Her hair came out exactly how I wanted. She looks too cute! Can't wait to see how they come out.
I wrote a letter today to get her into Kindergarten. She missed the cut off by 20 days and she is so ready to start! I will most likely have to get 3 kids off to school with a newborn at home. That doesn't sound easy. I better get that baby on a feeding schedule asap.
Brendan walked three houses down and back to the pick up Makayla's friend yesterday afternoon. He looked great! I wish I had my phone and took some pictures. He pulled his right foot all the way through every step. I couldn't believe how good he looked. I just wish had more stamina. He was so tired. He almost didn't make it back all the way. I motivated him and we did make it. I can't carry him!! I just wish he could gain more leg muscle and walk all day like most kids. His right leg doesn't turn out as much either and he can walk easier.
I feel huge!! This pregnancy has made me pop instantly. I have only gained 3 1/2 pounds but I feel llike I look 6 months pregnant! I have a long way to go so I hope I am not a huge whale by the end. I escaped stretch marks with my last two babies so I hope I can do the same with this one!
Tuesday, February 28, 2012
Accomplished a lot today
It is amazing what you can accomplish when you sit down at the table and don't move for hours. I had my computer, my cell phone, paper, a big list of what to accomplish. Makayla was great as always and drew pictures, played on the computer, and played Guess Who by herself while I made a ton of phone calls.
It is easy to fall behind and put things off to another day. I seem to do better when I have a list in front of me. I like crossing things off.
One thing I need to do is call Braunability. They helped Toyota build the accessible van but when there is a problem the Toyota dealership says it isn't covered by the warrenty. This is not true and I need it sorted out before Friday. It is going in for an oil change and a recall but I also want to bring up an issue. Every time my husband drives the airbags don't work when he turns the van on. It has never happened to me but every weekend he drives and it happens. He turns off the van and turns it back on and usually the airbags turn on. It is so strange. I don't want to pay for this to be fixed. I am sure they will say this was caused due to the conversion but if Toyota works with Braunability to build these vans everything should be covered under warrenty! Why do I have to pay for anything on a brand new vehicle?
Makayla goes for her 4 year pictures tomorrow. Yes I am 5 months behind but hey she is still 4! We picked out a brand new outfit and shoes so she should look adorable.
Thursday is Brendan's neurology appointment. Let's all hope she says he still doesn't need Botox! I think he may not yet again, thanks to PERCS. Going on 15 months with no Botox injections!!!!
I just thought of a few phone calls I forgot to make. I better start another list for next week. I really need a will. I need a new orthopedic for him and I need to check on all that equipment I ordered for him! Darn 3 more phone calls. :)
It is easy to fall behind and put things off to another day. I seem to do better when I have a list in front of me. I like crossing things off.
One thing I need to do is call Braunability. They helped Toyota build the accessible van but when there is a problem the Toyota dealership says it isn't covered by the warrenty. This is not true and I need it sorted out before Friday. It is going in for an oil change and a recall but I also want to bring up an issue. Every time my husband drives the airbags don't work when he turns the van on. It has never happened to me but every weekend he drives and it happens. He turns off the van and turns it back on and usually the airbags turn on. It is so strange. I don't want to pay for this to be fixed. I am sure they will say this was caused due to the conversion but if Toyota works with Braunability to build these vans everything should be covered under warrenty! Why do I have to pay for anything on a brand new vehicle?
Makayla goes for her 4 year pictures tomorrow. Yes I am 5 months behind but hey she is still 4! We picked out a brand new outfit and shoes so she should look adorable.
Thursday is Brendan's neurology appointment. Let's all hope she says he still doesn't need Botox! I think he may not yet again, thanks to PERCS. Going on 15 months with no Botox injections!!!!
I just thought of a few phone calls I forgot to make. I better start another list for next week. I really need a will. I need a new orthopedic for him and I need to check on all that equipment I ordered for him! Darn 3 more phone calls. :)
Monday, February 27, 2012
Back to school! One vacation down....one to go!
Vacation is over. I was actually dreading vacation being pregnant but I made it through the whole week! I must admit I enjoyed not getting the kids off to school everyday. Brendan even let me sleep until 7 or 8 all week. Vacation was just not very exciting since three of us had colds. I wish I had the energy to take them somewhere fun like Chuck E Cheese but the thought of that place being over crowded and me being nauseous and hormonal made me second that thought. I did take them to Friendly's for an ice cream sundae one night and the girls got to spend the night at my mom's. Brendan had a fun weekend with his dad going to Monster Jam. He goes every year! For a child who jumps at his own dog barking I can't understand why he loves those loud trucks. Usually I get a text picture of him grinning ear to ear but I didn't this year. He told me dad forgot his head phones so I hope he still enjoyed it.
I am 14 and 1/2 weeks and still nauseous. I am so sick of feeling like crap! I need some energy at least for a few months! I am starting to get varicose veins on my thighs and they hurt so much. I had them really bad with Brendan....so bad I didn't think they would ever go away and I would need plastic surgery. I was only 22 so let me tell you I freaked out! Another reason I think it is a boy!! :) At least I know they will go away or at least they better being 32 this time! They hurt when I stand just making dinner so I am thinking the next 26 weeks or less will be the longest 26 weeks of my life.....besides my pregnancy with Brendan because that was pretty much torture the entire 33 weeks.
I am thankful for having the best husband in the world who lets me complain every day about how horrible I feel. My mom just reminds me I wanted this. Yes I want a baby but no I do not want to feel like junk my entire pregnancy with a family and house to take care of. :( If only my husband didn't work so many hours during the week. I totally need him right now but I understand that isn't possible. So I will just keep complaining and getting through one day at a time which I definitely know how to do!
I am 14 and 1/2 weeks and still nauseous. I am so sick of feeling like crap! I need some energy at least for a few months! I am starting to get varicose veins on my thighs and they hurt so much. I had them really bad with Brendan....so bad I didn't think they would ever go away and I would need plastic surgery. I was only 22 so let me tell you I freaked out! Another reason I think it is a boy!! :) At least I know they will go away or at least they better being 32 this time! They hurt when I stand just making dinner so I am thinking the next 26 weeks or less will be the longest 26 weeks of my life.....besides my pregnancy with Brendan because that was pretty much torture the entire 33 weeks.
I am thankful for having the best husband in the world who lets me complain every day about how horrible I feel. My mom just reminds me I wanted this. Yes I want a baby but no I do not want to feel like junk my entire pregnancy with a family and house to take care of. :( If only my husband didn't work so many hours during the week. I totally need him right now but I understand that isn't possible. So I will just keep complaining and getting through one day at a time which I definitely know how to do!
Wednesday, February 22, 2012
Can we say Spring?
I can't believe the weather this winter. I could take these winters any year. I am feeling much better today and got some errands done. We then went for a power wheel ride on this beyond gorgeous day. Makay is staying with us because she is catching the cold and grama didn't want to get sick. We went to the pharmacy, bank, walmart and stop and shop and the kids were amazing! It isn't always easy with a wheelchair but he holds onto the front of the cart and I pull from the back and off we go. They were really well behaved the whole time and didn't get on my nerves at all!
Can I vent about a very old lady STARING! I don't mean looking I mean total staring and actually turning around to continue to stare as we walked down the aisle. I swear the old people are worse than anyone else. I even looked at her and smiled and she said nothing just continued to STARE at Brendan. Yes people he is in a wheelchair and out in public ~ OH MY! I understand they grew up in a different generation..she was very old...but common sense can't tell you that kind of staring isn't polite? I often wonder why I dislike people and there is a perfect example why.
I seriously need to clean this house but this pregnancy makes me exhausted. I am done for the day right now when usually I could do all that and clean the house. It is frustrating but I know not to overwork myself. I need to keep this bean safe. My mom and possibly Aunt is coming to visit tomorrow and I really want to mop but have no energy...maybe if I rest for a bit I will regain some.
Tuesday, February 21, 2012
Vacation and sick! Make your Guess!
Brendan and I have horrible colds and feel like junk. Makayla seems to be coming down with it as well. Brendan coughed so much during lunch he then threw up his lunch. YUCK! My head pounds every time I stand up. The kids are on vacation this week and I haven't done anything in two days. I couldn't even make it to the grocery store so thank goodness for my stock pile. I think it is pancakes tonight. Once I think about a certain food I have to have it. DH said to just order pizza but I don't want pizza I want pancakes!
We had a very lazy day of computers, wii games, and t.v. I have ZERO motivation. I did manage to do some laundry and shower but that is about it.
Grama offered to have the girls tomorrow and my mom might take them Thursday so I could just be Brendan and I. Hope we will feel somewhat better so we can actually leave the house, at least go for a bike ride or something.
I added a poll for fun. You can guess boy or girl. I have been super sick, I am not gaining much weight and my stomach seems to be a basketball so far, I have headaches, I did not go through a super emotional stage....11 people guess boy based on the nub theory from an ultrasound picture. I will post the picture on my blog. Have fun! I should find out in less than 6 weeks.
Thursday, February 16, 2012
Already Therapy time! Exhausted and NT Scan!
It is somehow already Thursday. Another 3 hour ordeal of therapy. He is in the pool tonight which is harder for me and it takes even longer.....I can't wait! I am so exhausted all the time. I know this baby has to be a boy because I haven't stopped feeling horrible since 6 weeks. I do get a day here and there where I feel pretty good but the exhaustion never stops! This is my first pregnancy not working so I should feel great! Boys just take their toll on me. It seriously better be a boy! :) The baby measured ahead so I am technically 13 weeks. I am ready for the 2nd trimester energy to kick in...not sure it will. I never felt good with Brendan so I am starting to think this feeling won't go away until he is born. I complain so much to my poor husband but it is so hard feeling so bad with 3 kids and a house to take care of. I told him this is the LAST baby....I am so glad I will feel done! I already feel done. haha 1/3 of the way there!
I had my NT scan yesterday and everything looked great to me. I don't know the results yet. The baby was moving his arms and legs and flipping over. I loved seeing the baby move and think about how he is doing that right inside of me. I can't wait to feel the movement. Heartbeat is 159 which is great. 4-6 more weeks til the gender reveal!
I had Brendan's Parent teacher conference last night. His teacher said he is progressing which is always good. The kids love him and he is asking to walk more. He gets to walk into the typical classroom in the morning and I guess all the kids love seeing him walk in in his walker. I love his school. :) We are still struggling big time with attention issues and I know this is hugely impacting his learning. I just don't know what else to do. He is on medication and they try many tactics to help him but he is so far behind. I try not to worry and let him learn at his own pace. I am sure one day he will amaze me as he always does! I told him he can't drive unless he learns to read....I think that may have hit a nerve with him. He brought his book to me last night and said he wanted to read it. Oh ya, cars and driving will motivate this child!
Friday, February 10, 2012
Special Olympics is AWESOME! & Neuro appt coming up
I am loving the winter season. A gymnastics place right in town donated their entire building for our kiddo's to use. 23 kids have joined and there is a ton of volunteers. The kids are constantly moving and doing things. Brendan has a huge smile the entire time. He has really amazing buddies who work really really hard with him.
He gets to play modified basketball, gymnastics, and do an obstacle course. Once again we don't always feel like going on a Sunday at 3pm but seeing him enjoy it so much for one full hour makes it beyond worth it. I feel like he works harder here than at therapy. I will try and post a few pics...I need to take more but there are sooo many people in there it is a bit crazy.
It is already that time. I feel like we just saw his neurologist. The big question is will she feel he needs botox???? He hasn't had botox injections since October 2010! Personally I don't think he needs it yet. We have been having him wear his ankle casts at night since PERCS and I think they are the best type of brace yet. He is still walking flat footed and his right leg isn't turning in as much and he still isn't tripping over his feet all that much. His teacher wrote me a note that he has been asking to walk a lot at school lately and they are letting him! AWESOME!
Thursday, February 9, 2012
1 hour therapy is a 3 hour ordeal!
I sometimes dread therapy. Some weeks it is at 4 and others 5pm. There are positives and negatives to both times. Therapy is 40 minutes away in the city so if it starts at 4pm I have to pick up both kids from school early. I leave at 2:40pm grab Chloe and head to Brendan's school for 3pm. We get to therapy about 3:45 and get in and settled. Therapy is until 5pm and we get home at 5:45 just in time for dinner. I try to cook ahead of time on therapy days. If it is at 5pm I get to stay home until they get home from school and leave at 4:15 but we don't get home until basically 7 PM due to traffic or if he has aquatherapy. We still have to eat dinner and I am beyond exhausted. Today is a 4pm day and I was sitting here dreading leaving in 9 minutes for a 3 hour ordeal so he can get one (if we are lucky one full hour) of therapy. Some days I wonder why I bother since 30 minutes is just stretching and if he is in a bad mood we almost get nothing accomplished. What 9 year old wants to go do physical work after being in school all day???
And yet again this is a reminder of how different lives can be with a disabled child. I think I would much rather take him to soccer right down the street!!!! Thank goodness I love him with all my heart and will do anything and everything I can for him because some days I just don't want to!
And yet again this is a reminder of how different lives can be with a disabled child. I think I would much rather take him to soccer right down the street!!!! Thank goodness I love him with all my heart and will do anything and everything I can for him because some days I just don't want to!
Wednesday, February 8, 2012
I know I have been MIA!!! Sorry!
I have been totally out of commission because I am FINALLY pregnant!!! I am almost 12 weeks. This baby has been wanted since my 4 year old turned 1 but it wasn't the right time. When it was the right time it just wasn't working out in my favor and after 3 horrible losses and years of trying we are finally having a successful pregnancy! This is the very last baby in our household and it is already kicking my butt. I am thinking it is a boy. Brendan's pregnancy was far worse but Makayla was so easy. I am constantly nauseous and beyond exhausted...which may be due to having 3 kids to take care of along with growing this human. I am so thrilled it finally happened but I am ready for it to be August! I am having a very hard time functioning. I had a good week but today is one awful reminder of how I felt for 5 long weeks.
Brendan is doing well. I am hiring a PASS worker and can NOT wait until she starts...which should be soon. I am still taking him to hippotherapy, aquatherapy and Special Olympics weekly so that can also be challenging. We got to go for a bike ride the other day and he did so well for not riding for a few months. He was so excited to go and I can't believe the weather was warm enough in FEBRUARY to go for a bike ride. I am not complaining about this winter at all! I am hoping the weather stays decent for school vacation which I am dreading. I am not sure how I will handle these kids all day feeling like I do. Maybe just maybe the sickness will be gone by then???
It has been just about 5 months since my dad passed and I still can't think about him without crying. Part of my problem is that I just think about how he died and how awful his last few years of life were. I need to get past that and think about the good times. It is very hard but as time goes on I am sure it will get easier.
My sister is pregnant with me! I think that is pretty neat. We are keeping my mom busy that's for sure. I am happy she has two little things to keep her mind busy. She is already shopping for baby furniture for her house :). My sister is only 6 weeks ahead of me so my mom is thinking of taking the summer off to help us out. That would be nice. She is due in July and I am due in August - if I make it that far-.
Due to my past I need progesterone injections starting at 16 weeks and I will have monthly ultrasounds after 20 weeks. Maybe I will have a full term baby afterall! I will try to update more often. I am trying to get out of this pregnancy haze I have been stuck in. I am so thankful to finally be pregnant but I don't think I thought it completely through having 3 children and one being disabled! It is NOT easy. It probably doesn't help my husband is gone from 6:30am until 6:30 pm or later. It is all me all day. Thank goodness my 4 year old is 'taking care of me' and even lets me nap when I need to. She is beyond sweet. We just told the kids last week and they are all very very excited!
Brendan is doing well. I am hiring a PASS worker and can NOT wait until she starts...which should be soon. I am still taking him to hippotherapy, aquatherapy and Special Olympics weekly so that can also be challenging. We got to go for a bike ride the other day and he did so well for not riding for a few months. He was so excited to go and I can't believe the weather was warm enough in FEBRUARY to go for a bike ride. I am not complaining about this winter at all! I am hoping the weather stays decent for school vacation which I am dreading. I am not sure how I will handle these kids all day feeling like I do. Maybe just maybe the sickness will be gone by then???
It has been just about 5 months since my dad passed and I still can't think about him without crying. Part of my problem is that I just think about how he died and how awful his last few years of life were. I need to get past that and think about the good times. It is very hard but as time goes on I am sure it will get easier.
My sister is pregnant with me! I think that is pretty neat. We are keeping my mom busy that's for sure. I am happy she has two little things to keep her mind busy. She is already shopping for baby furniture for her house :). My sister is only 6 weeks ahead of me so my mom is thinking of taking the summer off to help us out. That would be nice. She is due in July and I am due in August - if I make it that far-.
Due to my past I need progesterone injections starting at 16 weeks and I will have monthly ultrasounds after 20 weeks. Maybe I will have a full term baby afterall! I will try to update more often. I am trying to get out of this pregnancy haze I have been stuck in. I am so thankful to finally be pregnant but I don't think I thought it completely through having 3 children and one being disabled! It is NOT easy. It probably doesn't help my husband is gone from 6:30am until 6:30 pm or later. It is all me all day. Thank goodness my 4 year old is 'taking care of me' and even lets me nap when I need to. She is beyond sweet. We just told the kids last week and they are all very very excited!