Saturday, June 21, 2014

Halo in the Home

Things have settled down into a new normal now after being home a week from the hospital. Besides some few post-surgery areas that have needed tending to, the halo and vest have proved to be both a challenge and easier than expected. Nights are still our most challenging times, which makes the days a little harder, but I can say that grace has abounded so that we are all doing quite well. Please read to the end so you don't miss an important medical update!

How we both felt on the way home.
We had a sweet welcome home by brothers and Dad on Saturday (6/14) and have really appreciated the wheelchair for getting Henry around the house. The halo is definitely awkward, so I have to be careful not to get hit by it when moving or hugging him. Henry's pain has decreased tremendously and he made it through last night without any medicine whatsoever for the first time. Last night was also big progress as he slept in his own bed in his own room. The previous weeknights, he had been sleeping in his bed at the foot of our bed so that we could quickly tend to him and not keep waking up his brother. But, we started to notice that perhaps Henry was taking advantage of our nearness with unnecessary noises for attention and keeping us up way too much, so we decided to try the move. It went so much better for all of us. Henry cannot turn himself so needs moving periodically during the night when he gets uncomfortable, and occasionally loses a sheet or blanket and needs those pulled back up. I can't imagine not being able to move or reach things. He is adjusting and accepting this halo and vest more each day, and though he can go overboard or be demanding, we are glad he has no problem telling us what he's feeling or needing. How much harder it would be if more guessing was involved.

There are little adjustments that we have had to make for Henry's comfort and our ease of caring for him, like keeping the rooms cooled as much as possible, adjusting the heights of things, and being creative during bath time. A portable A/C was given to us and we need someone to come put it in for us, but praise the Lord, it has been pretty cool outside and we haven't needed it yet. Henry was frustrated the first few days as he realized how little he could do that he did before, but he is now understanding better that that will all return when the halo and vest come off. We are finding new and definitely more interactive things for him to do, and we are watching the countdown calendar. Henry is seeing how quickly the weeks go by and is already talking about what he wants to do when the equipment comes off. However, he does think he looks kind of cool, like an astronaut or firefighter with their gear on:). 

We have a fun list of "To Do's" and have already gotten out a couple times this last week. We had a special celebrative dinner on Monday for Father's Day, my 40th birthday, Henry being home, and for the last day of school. We do get a lot of stares when we're out but we know the halo and vest are as foreign to most people as they were to us, so we don't mind. We talk about how interesting surgery and this equipment must be to people and that we can help them learn more about them. Henry kind of tires easily but is definitely increasing in stamina, and he is definitely back to his normal chatty, curious self. When he is not talking away, he is usually pretty tired so we know it's time to rest. We also have a wonderful family reunion trip planned for July, and Henry is especially excited about riding an airplane again and meeting a lot of his family. Everyone is sure excited to meet him! 

During our hospital stay, the doctor mentioned that Henry diagnosis is now Metatropic Dysplasia instead of SED. This is a very rare form of dwarfism with specific joint and spine challenges that can affect breathing, the brain, and many areas along the way. Less than 100 known cases currently exist but the information available is helpful. An easy-to-read description can be found HERE.

We have a follow-up visit at Shriner's on Thursday, 6/26, to check the incisions and change bandages. Around six weeks, we will return for an x-ray to check how the fusion is healing and then know better when the halo and vest will be removed. Please continue to pray for our adjustment and Henry's care at home during this time, especially for his healing, and for the doctor's wisdom going forward. No doubt we have many surgeries and challenges ahead, but continue to trust the Lord for day-to-day grace. Please also pray for our family as we seek the Lord concerning the future, any changes we need to make to better care for the changing needs of our family. From the small details to the large picture, everything is different now and requires evaluation and adjustment. Henry is such a joy in the midst of it all and I cannot tell you how much our lives have changed for the better because of him. We are ALL blessed! Thank you all for journeying with us! Blessings.

1 comment:

  1. Hi--I just found your blog on the ND site. My family of 7 was at ND last summer in August and met Henry. We really fell in love with him and are so glad to hear he is adopted into your family. He is just such a special guy and we are so glad he is getting the medical attention he needs we will pray for him. Thanks so much for letting us know how he is doing.