Posts
Michael lost a lot of weight when he got sick and did get to as low as 50 pounds, and it still fluctuates quite a bit. He has gained most of that weight back though. The doctor's also said they thought Michael was very hypothyroid when he got sick, but his thyroid has tested normal. So, the Prednisone is doing its job at least in that way.
We have been working out ways for Michael to get outside more during the days, and how to do that so he is more comfortable (heat, light, sun / uv exposure). He has a pair of sunglasses (not the ones the Dr recommended but a good start) that have some UV protection. He has a cowboy hat that he wears to keep the sun off his head, and then he wears long pants and long sleeved shirts. He has gloves for his hands (which really need replacing but at least they work for now). It seems to be the amount of and length of exposure to the sun and UV (found in flourescents). Then we have a sheet that we cover the window he sits next to in the van to keep the sun off him, and we make sure he brings a large bottle of water. So, far it seems to work pretty good. It works semi-well, and the better he gets the easier it is to get out. It seems kind of an ordeal, but at least he can get out of the house. We had to figure something out for going to the doctor's all the time. I took a picture and will have to upload it onto our blog. Michael looks like he is ready for a mission when he goes out ! It really is kind of funny, and Michael is a great sport.
The rheumatologist gave us a referral to psychology, and mentioned the possibility of Asperger's or High Functioning Autism (not sure of the difference). The hematologist then called psychology, and had them come up to speak with us and Michael for a consult. We talked with the Dr who said an evaluation would be a good idea, and thought that Michael very well might have Asperger's Syndrome. If that is the case, then he has always had it. It would explain several things, and is not the first time it has been mentioned. It has come up several times by various professionals over the years since we adopted him at 6 years old. We just didn't know who the correct person for an evaluation was or the importance until recently. It would explain his many over-sensitivities to smell, taste, touch, lights, noise, and his constant headaches. The sunglasses seem to have helped in that regard a great deal.
The Evan's is under great great control right now, and his blood work has been very stable. His platelets are normal, and he is no longer anemic. All of which are really great news. We have even been able to drop the dosage on his prednisone some, which is great.
Michael is on a new medication for on-going digestive problems, and will be evaluated by gastroenterology this month. His food apparently is not always being digested, and he has a lot of belly problems.
We have a long way to go to figure out what all is going on with him, but one thing at a time, and praising the Lord we will get there.
Our cardiologist for our 6 year old son Joseph, referred us to a pediatric cardiology specialist whom we have to follow up on this week. His Holter monitor showed he has been getting very low heartrates in the mornings, and it is enough to be concerning since he already had two open heart surgeries to repair Transposition of the Major Vessels. The way they repaired it the two major vessels are still backwards with a tunnel changing how his heart pumps the blood to his body. This is putting extra strain on his heart because the side that pumps the blood to HIS body is normally designed to pump blood only to the lungs, and isn't designed to work that hard. We are concerned he may need another heart surgery sooner than we thought.
We are learning great fortitude and better financial management through all of this. We are so blessed by every single one of our kids. Our God is amazing !!
On a positive note, Joseph 6, Joshua 4, and Shawna 2 all loving playing doctor together, it is quite cute. Michael turned 12 years old Thursday, and Joshua turned 5 years old yesterday. Gabriela is looking forward to her birthday later this month, and Joseh in early June. And then, Mother's Day coming up too.
A friend of ours, Cathy, was gracious to donate cake mixes for all the birthdays !! It has most definitely been a busy month.
Blessings to your family,
In Christ,
Jennifer
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment