It's been a BUSY few weeks for Ella Grace. We were assigned a new pediatrician, now that the kids are on state insurance. I have to admit, that I was rather skeptical and worried, since I couldn't even pronounce her name, as to what we were getting ourselves into with Ella Grace. Our record hasn't been too great, in finding doctors who are equipped to deal with the medical needs of children with DS. Well, God knew what HE was doing, and we were assigned to an AMAZING doctor. She got the ball rolling on every kind of doctor that we needed to get in with, and we have had more appointments in the past 6 weeks, than we have had since she came home! I can't even begin to tell you how grateful we are to our new doctor, Dr. S.
First, Dr. S., ran some minor blood tests that STILL had not been done by previous doctors. Through these tests, we discovered that Ella Grace has tested positive for milk and egg allergies, as well as positive for Celiac Disease. Dr. S. immediatley set us up with a pediactric Gastro doctor, who is going to do a scope on Ella Grace in Januray, to determine if Celiac is indeed positive. He feels like her numbers are high enough that there is no doubt in his mind, but the only true way to find out a diagnosis, is to do the scope. He brought in his dietician to talk with me about changes in her diet, and took away the overwhelming feelings of what on earth we would be able to feed this child! The dietician also put Ella Grace on NeoCate, a dietary supplement that we add to her rice milk. She has tolerated it well, and now we will begin receiving it from a Home Health agency, who will deliver it to our home. He then sent her on to an allergy specialist. This past Friday, she went through Allergy testing, and this doctor wants to challenge her milk and egg allergy, since her skin didn't react to the tests. So, we are now re-introducing milk into her diet, and will later re-introduce egg. We feel like, so far, she is doing okay, but she is still drinking Rice milk (since we had already bought the Costco case). She has a patch of ezcema (spelling?) behind her ear that gets really bad when she is reacting to foods. I'm noticing that it is coming back, since milk has been added back in, but we are watching it closely for now.
(Trying to escape from Dr. T's office (Gastro Dr.)
Another specialist that Ella Grace has been to, is the ENT doctor. Back in May, Ella Grace had a hearing test and failed with mild/moderate hearing loss. At that time, no referral was made, and no mention of sending her to an ENT was made. Dr. S. scheduled her for a repeat hearing test, which Ella Grace took in early December, and failed again. The ENT has set her up for ear tubes and adnoid removal, all to be done on December 28th. We will see if the tubes will improve her hearing, and we are praying that it makes a difference for her. Speech will come once she's able to hear better, and we are so excited to see if this helps! She is already trying to say so much, so if this helps at all, I really feel like her speech will take off!!!
Ella Grace was also referred to her second cardiologist appointment. Dr. O. saw her in May, and wanted to see her one more time in 6 months, so early December, we went, and he CLEARED her! He wants to see her on a yearly basis, but he's very happy with the surgery repair that was done in China, and feels like her heart is very healthy!
Appropriate shirt for her Cardiologist appointment, don't you think? :o)
Lastly, Ella Grace has finally been set up with all the necessary therapies that she needs. She starts OT Occupational Therapy) tomorrow morning, where we are going to start working on CHEWING!!! I'm so excited to overcome this hurdle! She starts PT (Physical Therapy) in two weeks, and we are on the waiting list to start Speech, so hopefully that will fall into place, soon! She also goes tomorrow for her pre-op appointment, for her tubes surgery. They won't do outpatient until she has been cleared by the anesthesiologist, because of her heart surgery. If he won't clear her, she will have to do the surgery in patient, but we are just going to do what's best for Ella Grace. Whatever they deem safe, will make us happy! She also has to have pre-op bloodwork tomorrow, which really WON'T make her happy, but hopefully it will be quick, with no digging in her little arms, like last time (both arms). But this is at the Childrens hospital, so hopefully they will know better what they are doing!
It's been overwhelming the past two months, to add in all of these appointments, along with working, and life with 3 other kids to keep up with, but each appointment, we have been blessed with doctors who have shown alot of compassion and kindness. Our foot is finally in the right door, and we are making progress, quite quickly! Please pray for smooth and easy procedures these next couple of weeks. It makes me nervous, having to put her under. I don't think I have ever been comfortable with it, but when your child has had heart surgery, it really just makes me a nervous wreck to think much about it!
And just to leave you with a little speech progress from Ella Grace, here she is signing/saying "Applesauce". It's her favorite sign right now, and you better believe, every time she signs it, she gets what she wants! :o)
