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 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.