Merry Christmas!

Merry Christmas!

 

 

 

I have really put off this blog update for a long time. I wasn't quite sure what to say or how to say it. I have finally decided to give it a go. The last month has had some incredible highs and also some pretty low lows.

 

 

I will start with the highs as I always prefer to focus on the positives. Bruce LOVES his new job. He is happy (happier then I have seen him in years). He looks forward to work. He finds it interesting. He likes the people. It is all around a great fit. I am so thankful for the many of you who prayed for us and with us as we awaited news on this position.

 

Another high is that Alex continues to thrive at school. He loves his classmates. He LOVES his teacher. He is doing great academically. I am so grateful I prepared him well enough that he has not missed a beat. He is attending about 4 hours a week and while we have played around with the schedule we seem to have found a good fit. Unfortunately, we had to hold him out most of the last two weeks as there is quite a bit of flu going around. We did allow him to attend his first holiday party!

 

As for the lows, Alex has had a rough few months medically. As some of you may remember, when we were in Houston in October our GI doctor decided to trial Alex off of nightly IV fluids. Pretty shortly afterwards, Alex started to decline. We were in contact with multiple doctors almost daily. While all the doctors and nurses tried to decide what was best, Alex was deteriorsting rapidly in front of us. He became extremely lethargic, stopped participating in his favorite activities and became extremely pale and even skinnier then normal. We even had one nurse who evaluated him tell us she felt he was headed for an imminent crash. We were very concerned for his well being. After many weeks of discussion, it was decided that it would be best for us to seek a new GI opinion, specifically with a doctor who specializes in motility disorders. We are very anxious to see this doctor right after the new year. In the meantime, Dr. K and a complex care pediatrician are working together and have reinstated IV fluids pending our appt. Our pediatrician was amazed at the turn around after just one night back on fluids. We have seen some improvements, but our Bug doesn't have all his energy and strength back quite yet. We are so grateful To Dr. K and the other doctors that worked very hard to help Alex.

 

Alex is really excited for Christmas. He has loved searching for Elfie each day and seeing what mischief he has gotten in to. Grandpa is hear for the holidays so it has been busy. We have also enjoyed activities with playgroup and cub scouts. We continue to feel so blessed by these two amazing groups who have meant so much to us.

 

In other news, my sweet Hayley girl (our 11 year old black lab) had to have surgery on her foot this past week. She is recovering well and I am so glad she made it through surgery without any complications. Have I mentioned we LOVE our vet!

 

As this year comes to a close, we are so thankful for one of the best years for Buggy. Our prayers for everyone to have a very Merry Christmas and a Happy, Healthy New Year!

 

Ali

Happy Thanksgiving!

We have so much to be Thankful for Today!

Family- Who have sustained us emotionally and financially so many times over the last 5 years. No matter how bad things get they step up to the plate and help us.

Friends- Who have cried with us, laughed with us, prayed for us and celebrated with us. We are so blessed to have so many incredible friends.

A Medical Team- Doctors, nurses, therapists, a psychologist and so many more who have contributed to keeping Alex healthy. In this case, it truly does take a village!

Playgroup and Cub Scouts- Who have embraced Alex and make him feel so "normal". They are our saving grace, the place we turn when we need fun and we are so grateful for them.

Eagle Ridge Elementary- This school is so incredible! They have gone above and beyond to give Alex a true school experience in 3 hours a week. They have been so willing to work with us to meet Alex where he is. We are so lucky that he has such an amazing teacher.

A job on the horizon that is so exciting. Bruce cannot wait to start work with Lehigh Hanson. For the first time in years, he is excited about his career.

Our church- Keller United Methodist has been a part of our family since Alex was born. No matter how long it is between visits they welcome us with open arms and always keep our family in their prayers.

I am sure I am missing someone. We really are blessed this Thanksgiving!

Quick Update

Just a quick update to let everyone know we are doing well!

Alex is LOVING school! He has the most amazing, loving teacher. She has truly gone out of her way to make Alex feel loved and included. I am so thankful for the caring souls that God has placed in Alex's life. With everything he has been through, he has always been surrounded with love and that means the world to me. The schedule has definitely been a little rough to get used to. Alex is exhausted. We are tweaking certain parts of his all around schedule to allow for the most rest and down time. Who would of thought 3 hours of school a week would be so hard!

Last weekend we attended the Longhorn Camporee for Cub scouts. It was held at the Speedway and was a fun morning for us. Unfortunately we didn't make it all day as Alex was tired and his legs really hurt.  It was such a "boy" event. Lots of guns! Alex loved that part. All my rules about guns went down the drain! Here are some pics!

 

 

As for medically, we are still trying to figure some things out. We are watching labs and talking to the doctors often as we try and sort out when and how much IV fluid to give him. He is adjusting well to his oxygen and is not fighting me about wearing it any longer. We have also started a new medication as needed for stomach pain and it is helping some so that is good.

 

 

Alex and I have to make a quick trip to Houston Tuesday and Wednesday. Please pray for us to travel safely. Also, Brucey has a second interview for job he would love today at nine. Please lift him up. A job before Christmas would be a HUGE blessing!

Love you,

Ali



A day I never thought would happen!

How do you put in words the emotions of reaching a goal you never thought would happen? How do you control the tears when your child rises above what you hoped for?

Four years ago, I joined many of my friends as we registered our babies for kindergarten. I imagined the first day. I dreamed of school pictures, PTA meetings and class parties. Less then a month later those dreams were dashed when the doctors informed me that Alex was not well enough to go to school. For the past 4 years I have joyfully homeschooled Alex. I have loved every precious minute with my boy as I watched him learn and grow. But there was always a touch of sadness each August as the kids all headed back to school. For us, there were no first day of school pictures. No new friends made in class. No report cards to brag about.

Totally unexpectedly, today those dreams came true. Today, I am proud to present Alex's first day of school pictures!!!!!

So how did this come to be? After a pretty good year Alex's doctors decided he was well enough to go to one half day of school a week. To me sending him one half day a week didn't make sense or accomplish the goals we all have for him. After talking to some of my closest friends and brainstorming, I envisioned the perfect plan. However, I never thought we would get the school or district to agree. Alex's school has been INCREDIBLE! From the first day I stepped foot in the office and spoke to the principal they have embraced Alex. The principal has cried with me and vowed to fit "a lifetime of experiences" in the short time he is in school. We met this past Tuesday to make it official. Alex will be on campus about 3 hours a week. He will go to library, PE and computer. All his choice. We will continue to do our academics at home. It is the perfect compromise. The best of both worlds!

Alex went yesterday and met his class. His teacher has been fabulous...warm and inviting, caring and compassionate, so accomodating. She has a plan to let Alex skype into class several times a week so he can participate in class without the ramifications of being in school. Here are some pictures from his meeting yesterday!

 

 

Oh and to make things even more perfect...Mimi and PopPop are here visiting so Mimi has been able to participate in all these firsts. Whoever imagines they'll be walking their child to his first day of school in November when they are eight. It is just so special. This is not a day we ever thought we would experience. And because I forgot, here are a few halloween pictures.

We ask that you lift Alex up in prayer as he begins this new journey...that it is everything we hope for and more. We also pray his health holds up. We also ask that you continue to pray for Bruce to find the perfect job. Thank you for loving my boy and following the journey of our crazy life.
Ali

Not the easiest week!

This week we were in Houston for a series of appointments. Several of the appointments held surprises that caught me off guard. I will admit, I came home physically and emotionally exhausted. I have had some people ask though, so here is a brief breakdown:

Pulmonology: Alex's respiratory status is the worst it has ever been and has been steadily declining for years. We discussed several theories and her feelings are that his GI status, specifically his bloating, is effecting his lungs. She feels like his extreme bloating is pushing into his lung space and not allowing his diaphragm to collapse completely. She can't help this at all. The other change is that she wants to trial Alex on oxygen overnight. We will also repeat a sleep study on one of our next trips down.

GI: Dr. N wants to once again challenge Alex's body to see if he can handle not getting IV fluids daily. We have tried this multiple times in the past and always had to go back to fluids or TPN. We will go back to doing labs weekly to see how his body handles this as well as measuring his urine output. We are also trying a new medication when he has increased stomach pain. We are doing a round of antibiotics to see if we can decrease the bloating that could be due to small bowel bacterial overgrowth.

Neurology: Dr. K is concerned about his very poor hand strength and continuing neuropathy despite medication that we have increased multiple times. These both could be related to his syrinx (fluid in his spinal cord). We will repeat an MRI of his spine and brain as soon as possible to see if there has been any change. We are also keeping an eye on his "shaky" feeling for now as it could be quite a few different things.

Immunology: Dr. P continues to be thrilled with the change in Alex since starting immune replacement therapy. She also was going to talk to Dr. J about his respiratory status.

Endocrinology: Alex continues to struggle with significant hypoglycemia. However, Dr. R is pretty sure it is related to his poor liver function so again not really anything to do for it. He is already fed 24 hours a day. His growth has also slowed down, but there is a pattern of his gropwth being good on TPN and slowing when he is only on tube feeds. He does want us to continue to use the continuous glucose monitor as an early warning system for when the hypoglycemia reaches a level that needs to be treated.

The week was made so much better because we got to enjoy time with good friends. Sure does make these stressful trips better!

Where has a month gone?

I just realized it has been almost a month since I last updated! This year is just flying by!!!!

Right after I last updated, My sister and nephew came for a visit. We had so much fun. It has been too long since we were together. When the kids were younger we always saw each other several times a year. Now with Skye in school and the struggle to travel with Alex, it just doesn't happen as often! The boys had a great time. We went to the zoo, the trampoline park and just had lots of play time at home.

 

 

After a quiet a quiet week, we geared up for another crazy weekend last weekend. On Friday, we were fortunate to once again be invited to watch the Fort Worth Air Show from the VIP area with Make A Wish. Alex loves our time with his MAW friends. Each event we attend, we become friends with more families. We are so grateful for the fun events they continue to invite us too!

 



 

 

The next day we headed out bright and early for our Fall Campout with Cub Scouts. We woke up to FREEZING temps. We packed lots of warm clothes, gloves, hats, etc and headed out. We got to the campsite set up our tent and Bruce and I sat to hang out with some of our friends while the kids took off to the woods to explore! Alex had a blast. He spent hours in the woods being a "normal" boy! It was one of the most fun days he has had. Unfortunately, he paid the price. By dinner time, he came to me crying in pain from his legs hurting so bad. We left it up to him whether to tough it out or head home, but it soon became clear that he couldn't do anymore. We took down the tent and headed home. One of the hardest things for me as a Mom is watching Alex pay the price for fun. It breaks my heart that evrery fun adventure comes at a cost. However, Alex and I wholeheartedly agree that we wouldn't change anything. Sometimes, fun is just worth it! I continue to be grateful for Alex's pack and especially his Den who support Alex and accept whatever he is capable of. They have been such a huge asset to our family.

 

This past week, we laid low. We did manage to have a great afternoon at the park with our best friends!  We miss the days when it was easier to get everyone together.

 

This weekend, we once again joined our MAW friends for a fun adventure. BNSF invited us on a train ride complete with face painters, magicians, clowns, etc. Alex was just happy to have an afternoon to hang out with friends. While the adults enjoyed some fun conversation for a few hours.

 

 

Medically, Alex continues to do pretty well. We are once again struggling with some pretty significant Hypoglycemia. I am not sure that we can do anything different at this point, but Alex is tired of feeling "shaky". We have even seen some small seizures over the past week. We are getting ready to head to Houston next week for a few days (or possibly longer).  There has been discussion about restarting TPN (IV nutrition) as Alex has lost all the weight he gained on it and is back to 40 lbs. I will not know until we get down there whether we will be admitted. But, we have appts Mon-Thursday anyway.

 

Thanks for walking this crazy path with us,

Ali

 

PS- Please continue to pray for Bruce to find the "perfect" job. He has had some good interviews and we are hoping an offer is right around the corner. We trust that God is holding us firmly in his grasp during these difficult times. We appreciate each of you that has reached out to us.

 



An Amazing Weekend

This past weekend we were blessed with an incredible family weekend that was more then I could have hoped for. Alex has been in Occupational Therapy since he was 18 months old and physical therapy since he was 3. The majority of our therapy has been done through Our Children's House at Baylor. Two years ago, we learned that they run a family camp every September. We applied, but were placed on a waiting list. Last year, Alex was in the hospital in September and was not doing well so I didn't apply. This year I was sure to get our application in early and we were selected to go! We eagerly anticipated camp, but were unsure exactly what to expect.

The view from our cabin

 

We left here Friday afternoon and headed two hours south to the middle of nowhere! Once we arrived, we checked into our own cabin and got settled before dinner. At dinner, we hooked up with the three counselors who were from our therapy center. After dinner there was time to mingle and play in the sports barn. We also got to sign up for our activities for the weekend.  We didn't really meet any other families Friday night.  Saturday after breakfast we headed to the ropes course for our first activity. Alex's only other experience with a ropes course wasn't great. We went to mito camp a few years ago and kid after kid climbed the rock wall and rode the zip line down. Alex climbed about 2 pegs and was too scared to continue. I gave him a big pep talk about how brave and strong he is and held my breath. I could not hold back my tears as my sweet boy conquered his fears, climbed the tower and rode the zipline not once, but twice. The support from the other families and counselors was great. They cheered him on the whole way.

 

 

As the day went on we got to paint pottery and make a platter for our family, enjoy arts and crafts and swim. We also got to meet some of the most incredible families and hear their stories.  Late Saturday afternoon was swimming time. Alex was so excited because there was a diving board and he has never been off a diving board before. As we got ready to get in the pool, the camp director let us know that anyone who wanted to go off the diving board would have to pass a swimming test consisting of swimming the width of the pool 3 times. As most of you know, Alex struggles quite a bit with endurance. I was really worried, but he has worked so hard on his swimming this summer. Alex was the first one in the pool to test and with a host of cheerleaders, my baby PASSED the swimming test. I cannot begin to tell you how proud I was of him. He spent the next hour happily going off the diving board!



 

 

This weekend was about so much more then us just having fun (which we really did). This weekend was about watching my boy make friend after friend. Watching him just get to be a kid. It was about watching him charm all the counselors and staff. I loved the fact that he doesn't see disabilities like so many of us do. That it doesn't matter to him whether someone limps, has trouble talking or is in a wheelchair. To him they are just friends. For one of the only times in his life, this weekend he felt "normal".  For me, I was amazed by some of the stories...a little girl who fell from a play structure and shattered 3 vertebra in her neck. She shouldn't be alive and yet you would would never look at this beautiful girl and know she was any different. The little boy who had a massive stroke 3 years ago, but was playing basketball and bowling with Alex. The girl who had half of her brain removed to stop her seizures, but is walking and talking and Loves sparkles. The little autistic boy who didn't want to do anything, yet with his Dad's help he managed to climb the rock wall. The little girl who lost her leg and her Dad in a car accident , but was never without a smile. This weekend was miracle in so many ways and I am so grateful we got to be a part of it!

 

 

Once again we have a busy week this week. My sister and Skye are coming to see us on Thursday! We are so excited. It has been way too long! We will have a fun weekend hanging out with them.

 

 

We continue to pray for Bruce to find the perfect job. As the weeks pass on, the worry creeps in. I have faith that the right job is right around the corner.

 

Ali

 

 

PS:Over the past few years many of you have supported Alex in his Popcorn sales for cub scouts. Both of his first two years, he has been top salesman for his pack (about 80 kids). He has once again set the goal to be top salesman. If you would like to support Alex in reaching his goal, please go to http://www.trails-end.com/shop/ In the top right hand corner, it says you are supporting no one. If you click on change, you can enter Alex B and our zip code (76244) and the sales will go to his account. Thanks!







A Hard Week

This is a week that always sneaks up on me and leaves me unsure of what to say! Six years ago I had never heard of Mitochondrial Disease. I could not have told you what Mitochondria were. And yet, Mito has become the central driving force in our life. When God blessed us with Alex 8 years ago, we could not have pictured this life. No one would choose this life and yet it is our life and we have found joy in our craziness. Our days are filled with feeding tubes, with central lines, with shots and infusions and meds. We spend our days in doctors appointments and therapy and often in the hospital. Our lives are filled with so much more. I get to spend my days surrounded by my sweet boy. I live with a child who always has a smile on his face. Whose laughter can put a smile on my face. A child whose bravery and courage are inspirational. I get to spend my days with a boy who is kind and caring.
I have seen firsthand in the last year what research and advancements can mean to these kids. One year ago Alex was accepted into the study at Stanford University. The results have been phenomenal. The new medication coupled with starting immune replacement therapy and closing a hole in his heart have transpired into the best year healthwise that Alex has seen since he was a baby. Research can change the outcome for these kids. A year ago, I could not think about the future. Now I can look into the future and hope!

 

 

 

As we get back into "real life". We are jumping back into school and cub scouts. Over the past few years many of you have supported Alex in his Popcorn sales for cub scouts. Both of his first two years, he has been top salesman for his pack (about 80 kids). He has once again set the goal to be top salesman. If you would like to support Alex in reaching his goal, please go to http://www.trails-end.com/shop/ In the top right hand corner, it says you are supporting no one. If you click on change, you can enter Alex B and our zip code (76244) and the sales will go to his account.

 

Thank you for the love you continue to show to our family. We ask that you continue to pray for Alex's help as well as for Bruce to find the "right" job.

Ali