Five Months

Five Months our precious Madelyn Paige has been with us! She has brought so much Joy into our home. She has such a sweet personality. She is a little quieter then Alex was at this age. She has a huge grin that lights up her face whenever she sees me, Alex or Bruce. She is still a little skeptical of people she doesn't know well, but she is getting better. This month she has found her toes, started laughing and learned to blow raspberries. She loves music and bath time. But most of all she loves her big brother!

Before Maddy was born I researched a ton of newborn photographers in our area to find one that I liked and was affordable! (I couldn't believe how pricey some were!) We settled on Heather Parker in Roanoke. www.hparkerphotography.com I couldn't be more thrilled with our pictures. She was also one of the few photographers who would give me full copyright of the digital files!

I have told so many people...to me she is a little doll. Everything from her look to her personality is just so precious. I am thankful everyday for this little gift!

A busy few weeks!

We are so busy these days...I always mean to update this blog and by the time I get around to it another month has passed! It doesn't seem possible that Maddy is almost 5 months old. We continue to be really busy with all of our fun extra curricular activities. Alex loves cub scouts, taekwondo, co-op and science class. Maddy has fun at her little sign and sign class. Add all of our medical appointments and homeschooling and our days are crazy!

Last week we were in Houston for a bunch of follow-ups. We were so lucky to have Mimi and Pop-Pop with us. I have always loved watching the relationship between my Mom and Alex grow. They love each other so much. Now I have the joy of seeing my mom fall in love with my sweet girl. It is such a blessing to watch. This trip was especially nice because Maddy is really blossoming. She has the sweetest little personality. She is smiling and cooing and just happy discovering the world around her.

Our first appointment was with Dr. Koenig. She was really happy with how Alex is doing overall. She did recommend that we discuss transfusing him with his hematologist here as he has some nagging issues that we think could improve with a little blood! Dr. K took a quick peek at Maddy as well and is happy with her development so far. We all agree the best thing in her case is to just watch and pray and not run any testing unless necessary.

Our next appointment was with Dr. Pacheco (allergy/immunology). She is also thrilled with how Alex is doing. SubQ IG has been truly life changing and we have all loved watching Alex spend more time out of the hospital. Dr. P and I discussed a plan regarding when and how to introduce solids to Maddy.

Endocrinology was a quick check in. Everything is status quo there. Same with the opthamologist. We also saw the dentist to set up a cleaning and x-rays to be done under anesthesia in May along with some testing for Dr. K.

Our final appointment of the week was with Dr. Jon (pulmonary). Once again Alex's pulmonary function tests have declined and are now at a scary level. Dr. Jon does not feel like we can sit and watch them decline any further. She is going to talk to the team in Houston and then reach out to Dr. Osuntokun here to try and come up with a plan to address the bloating that is impacting his respiratory status so significantly.

My Madelyn has also had us to the doctor a few times as we continue to struggle to control her reflux. Luckily she is still gaining weight and was 12 lb 4 oz at her 4 month checkup. Now if we could just keep her pain free! We also had to go for a PT exam. She has always preferred to look to the right side. She has also always slept with her head turned to the right. While we have been able to get her to look left when awake we can not get her to turn left in sleep. She has developed a flat spot and some associated issues. PT did an evaluation and sent us to a consultation for a band to help correct this issue. So soon my beautiful girl will be sporting a helmet for a few months!

I think that is it! I'll leave you with some pictures of my little sweeties!

Alex breaking a practice board

Maddy and Grampa Craig

Gramma and the kids

Alex and Mia

Blue and Gold Banquet

Alex and Master Park

Belt Testing

This is what happens a hundred times a day!

Mimi, Pop-Pop and the kids

Another Month!

Where does the time go? I really am trying to keep the blog updated, but my days seem to fly by and then I crash into bed exhausted at night!

Things have been going really well. We have been so busy, but for the most part it is GOOD busy!

Okay let me back track...
At the end of January we had the the pinewood derby with cub scouts. Alex originally did not want to participate, but with 4 days left he decided he really wanted to do it. So Bruce and Alex hurried to get a car ready. Not only did Bug win Best in show for the webelos (his rank), but he had his fastest car yet. His entire den did great and his best friend, Walker won the overall speed Champion! ore then anything Alex was happy to have a day to spend playing with his friends.

I know I say this often, but we are so blessed to be part of this incredible group of boys and their parents. hey are such a nice group of boys. hey are kind, respectful and really enjoy each other.

The first week of February, Gramma and Grampa (Bruce's parents) came to visit. We had a really fun time. We went to the aquarium, Legoland, shopping and had lots of good times playing at home. It was so nice for them to get to meet Maddy and have some time with Buggy. Pics to come!!!

Since September we have been part of a homeschool co-op that meets the first, third and fifth Friday of every month. because  was on bedrest for most of the fall, I really didn't get to meet anyone. This semester we have become friendly with several families and it has been so awesome to have some new friends. We went on a field trip to the Perot Science museum, have had multiple playdates joined a science experiment class and been to the park. It is so nice for me to have some girls who can share the joys and struggles of homeschooling and Alex is thrilled to have made some really good friends. Now if we can just figure out how to fit everything in our days! Speaking of co-op, I have also been approached by several of Alex's teachers telling me how much they enjoy having him in class and what a leader he is. It makes me proud that he is able to go into a classroom and show his incredible spirit in a way that touches people.

A few weeks ago we were approached by child life at Cook Children's Hospital about having Alex's picture on a wall in the hospital. I agreed and Alex was thrilled! He was interviewed in late January and had his pictures taken this past week. I saw a few on the photographer's camera and they looked awesome.  can't wait to share them once we have them.

I have signed Maddy up for Kindermusik. It is a music class that is fun and helps foster development. Alex and I did it when he was a baby for several years. Maddy had her first class on Wednesday an LOVED it! his semester is called sign and sing. They are learning sign language. Ms. Kat has had babies as young as 5 months old start to sign back. Maddy is fascinated when  sign to her and just grins and grins. She is really starting to have such a cute personality. She is smiling all the time and has really found her voice. She is definitely a mama's girl. She is VERY attached to me. She loves her brother and looks for him as soon as she hears his voice. She loves to be in the playroom when he is playing so she can watch him.

On Friday, Alex once again belt tested in taekwondo. He continues to thrive I his classes and absolutely loves it. They did not find out the results yet, but I have no doubt Alex passed as he did an incredible job!

I am so proud of my boy as I see him work so hard to overcome the effects of his mitochondrial disease and accomplish his goals.

Medically, everyone is holding their own. Alex has not gained any weight in a year and is struggling with fatigue again. He is back to taking a 4-5 hour nap almost every afternoon. We are tinkering with his TPN in hopes of getting him feeling better again. He is also being started on iron and is very close to needing a blood transfusion again.  Maddy is almost 4 months, weighs 11 lb 14 oz. She is doing pretty well. She is still struggling with reflux, but is doing well overall.

Thanks for checking in!
Ali