Alex and Maddy

Alex and Maddy

Friday, January 17, 2014

Medical Update

The last few weeks have been crazy with a ton of appointments. I need to catch up quickly before I forget everything! I am going to go by date to make it easier.

January 2nd- Alex had 2 appointments. The first was with endocrinology. We are kind of at a stand still with endocrinology. We would all love to be able to give Alex several hours a day unhooked from his feeds/ TPN. Unfortunately, his blood sugars don't hold and Alex feels really bad. We have decided to leave things alone for now and possibly challenge him inpatient in the spring. He also saw pain team. He is working with them on guided imagery to try and give him a way to handle pain without medication.

On January 10th Maddy had her first fever. Because of her age we had to go see Dr. Benzick. He examined her. She would up having a UTI. We started her on antibiotics. Poor girl she was pretty miserable for a few days while the medicine kicked in.

On Sunday, Alex, Maddy and I traveled to Houston for appointments on Monday. Alex and I were both scheduled to see cardiology. Alex's heart rate is too high all the time at this point. It also jumps up quite a bit when he is sitting or standing. We are starting him on a beta blocker to try and bring his heart rate down some. I was asked to see this doctor a year ago. The hole that Alex had in his heart that was closed in June of 2012 has a 90% chance of a family member having it. My Mom was tested and she has the same defect. I had an echo on Monday and I also have the defect. I will have further testing and a possible closure sometime in the spring.

Tuesday, January 14- Maddy had 2 ultrasounds. The first was an ultrasound of her kidneys. This was ordered because of her age and the fact that she has a UTI. They wanted to be sure her kidneys looked okay structurally. They checked out fine. We will hope that this was a fluke infection. If she develops another UTI they will do some more testing. The second ultrasound was because of her reflux. She continues to have pretty bad reflux. They wanted to look and be sure there is no anatomical reason for her to be refluxing. The ultrasound showed that anatomically everything is fine, but was read as "multiple episodes of significant reflux". We have started an additional medication to try and keep her more comfortable.

Wednesday, January 15- Alex saw hematology. We discussed Alex's MRI of his liver. The iron buildup in his liver cells is better. We are rechecking his iron labs, but most likely will be starting iron supplementation in the near future. Alex has been sitting just above his transfusion threshold for a few months now. We have seen an increase in fatigue. He is back to taking his 4-5 hour nap every day and is complaining of feeling exhausted. We have decided to give him a few more weeks to see if things improve for him. If he is still feeling so fatigued will give him a transfusion to see if we can make him feel better. We also checked his clotting because of some unusual bleeding we had this week. (He had blood dripping out of his jtube Stoma).

Thursday, January 16- Alex saw pulmonary. This is a "new" doctor for us at cooks. However, this is a doctor that we have known for years as he came from Houston! It is MUCH easier to see a "new" doctor when you don't have to give Alex's complete history and explain all of his "quirks"! His pulmonary Function Tests looked better then they have in years. We are so grateful for that. We have decided to leave everything as it is right now. If things decline again we will address them at that point.

Whew! That catches me up. I promise to do a fun post soon with our adventures and pictures.
Ali

Friday, January 10, 2014

Incredible News!

This is not something I have talked about openly. When I was 5 months pregnant with Maddy we found out that one of our genetic reports had not been synced correctly at the lab and Bruce's results were not correlated with mine and Alex's. They came back in July showing that Bruce and I both carry a genetic mutation that is known to cause mito. (It is not believed that this is the cause of Alex's mito because he only has one copy.) While initially our intention was to not do any testing on Maddy until at least 6 months, when this information came to light it was decided she needed to be tested at birth. I got the call earlier this week that Maddy did not get either copy of the mutation. We are so excited to cross this form of mito off the table as it could have been very serious. So we continue to enjoy every day with this precious girl and we will see what the future holds.

Saturday, January 4, 2014

Merry Christmas, Happy New Year and Two months!

My days are so busy right now I am struggling to find anytime for myself and especially to blog!

Let me see where do I begin...Early in December we were invited to Breakfast with Santa by Make a Wish. We always enjoy our time with the MAW family. We feel so blessed to be included in their fun activities.
 
On December 19th, Alex had his next belt testing. he tested for his orange belt and did an awesome job. I love watching him devote himself to something and working hard to achieve his goals. The instructors love working with him and Bug loves them. They are so positive and encouraging. Joining Kick Tiger martial Arts has definitely been a highlight of this year for us. Alex was so worried about breaking his board, but succeeded on his first try.
video
 
Mimi and Pop-Pop came to visit for Christmas. We were so excited for them to arrive and counted down the days before their arrival. We loved having 8 days to enjoy each others company. they got some good time with their Bug. He went out with them a few times on his own and even had a sleepover at the hotel! Mimi and Pop-Pop also got to enjoy seeing Maddy's little personality starting to shine through. She was full of smiles. I was grateful to have Mimi's arms to share the snuggle time and give me a break. Pop-Pop also helped Bruce fix some things around the house which was so helpful to us.
 
The kids had an awesome Christmas. One of the highlights was Santa coming to our house on Christmas Eve. I wish you could have seen the expression on Alex's face when he answered the door. We also laughed watching Maddy.  She loved Santa. She was just grinning at him. Alex says maddy is the best Christmas present. I have to agree.


















(Somehow we had no pictures of Pop-Pop. Sorry Pop-Pop)
 
Mimi and Pop-Pop left on New Years Eve. It is always so hard to say goodbye. We desperately wish we lived closer to family and they could enjoy the kids on a more regular basis. I love watching the love between the kids and their grandparents.
 
Medically speaking we are doing okay. Alex had an MRI of his liver on December 20th. I was so proud of him as he did it unsedated for the first time and was a champ. He was so brave. he amazes me daily with his incredible spirit. We are struggling once again to get his nutrition at a better place. He has been very fatigued over the past month.  We are unsure whether it is the leftover issues from being sick or nutrition based, but we are working to try and get it sorted out. Otherwise, he is doing well.
Maddy turned 2 months old on December 31st. We had her 2 month check up. She weighed 9 lb 2 oz. She is really becoming more alert. She is a mama's girl. She loves to be held and is full of smiles. She is meeting all of her milestones. We are still trying to get a grasp on her reflux. Poor baby really hurts some days. And holding this child without a burp cloth is not advised! She loves her brother and he continues to be the BEST big brother. He must kiss her a thousand times a day.
 
I think that gets us caught up! I hope everyone had a Merry Christmas and that the New Year is every thing you hope for.
Ali