Bumpy Roads and Happy Outcomes

This week was a tough one for little Annie. It started Monday when I got a call from school to come pick Annie up because she was crying inconsolably and seemed to be in pain. We brought Annie home and we observed the same thing, which, I should add is definatly not an unusual circumstance. Annie ofter screams for hours inconsolably for reasons unknown to us. As parents we are sure she is in pain and have taken her to many doctors and run countless tests that all come back normal. After a few days the pain seems to subside and we have our Annie back. Needless to say Monday was a rough night and Tuesday I didn't even attempt to take Annie to school as she was still writhing in pain. I made my usual calls to specialists and came up with no answers. By Tuesday night the pain was not subsiding so we decided to take her to the ER. Going to the ER is a very difficult decision for us to make. We have had many trips there in Annies short 4 year old life and we always leave frustrated wondering why did we even go. It's tough to walk into an ER with a non verbal, screaming child and not know why she's screaming. We tell the doctors that she has Rett Syndrome and there response is either they've seen a milllion kids with that (which is an obvious lie because there aren't millions of us), or they are honest and say they've never heard of that. Then we attempt to educate a doctor (who is usually to arrogant to take the time to listen to us) as we are trying to console our Annie. After 5 or 6 hours we leave with no clear reason for Annies distress and discharge notes to see our physician the next day. Clearly we are reluctant to go. In this case we just couldn't wait and were pleasantly surprised when the ER doctor took our advice and ran every test that we asked for. We came to the realization after an X-ray of her stomach that Annie's intestines were filled with gas that was causing her excruciating pain. Annie has a g-tube which allows us to release gas pressure and she is on medicine for excess gas as well so this was weird. Unfortunatly rett syndrome causes Annie to "gulp air" and to such an excessive amount that we can't control it. Thankfully our GI doc came up with a med that may help when this happens. Sooo we finally had our first successful ER trip!

Wednesday Annie was off and on, still in pain but not as much. Mom and Dad had a meeting with Annies teachers and therapists regarding exactly what Annie is doing in school. We need to make sure she is up and walking as much as possible and being given a chance to voice her opinion and make choices. We want her to be treated as the other children are treated and allowed the same freedoms. These meetings are always hard for us. After almost 3 years of living with the diagnosis of Rett Syndrome I still have such a hard time talking to people about Annie and what she is able to do and what her set backs are. I try so hard not to become emotional but usually end up speding time afterwards in tears over all that Annie has to endure. Meetings like this take a lot out of me but I'm happy to report that everyone was very receptive to our concerns and suggestions. We are blessed to have a wonderful support system for our angel.

Thursday was Annies cardiologist appointment. Scott took time off of work to take Annie to her appointment which was so great because then I could spend time with James and Gracie, however, I was dissappointed that I had to miss Dr. Weinhouse. Dr. Weinhouse was the first specialist we saw after Annie's diagnosis with Rett Syndrome. He is the most compassionate, loving man to ever grace the medical field. He is calm, supportive and has the most beautiful things to say about our Annie. Annie sees a cardiologist every 2 years because girls with Rett Syndrome can have something called a Long QT wave which can disturb the hearts rhythm and can be serious enough to cause sudden death. 2 years ago we were cleared so this was an appointment to basically make sure everything is still going well. Our ECG came back that we do infact have long QT. Dr. Weinhouse calmly explained that he was going to run the numbers on his own and when he did he came up with another finding. He assured us that Annie DOES NOT have Long QT but in the same breath added that he wanted to see her back in 6 months (rather than our usual 2 years). This left us with even more worry about our precious little angel. We have again learned the lesson that we are not in control. We lift Annie up to our Lords very strong and capable hands and with aching hearts take comfort in the fact that He will work all things for Good. As many times as we've done this it never gets any easier. We are now praying that at Annie's 6 month recheck we will not see any signs of Long QT.

Thursday night Annie was feeling strong and free of pain. She had slept the better part of the day so we decided to keep her up late and have her do some PT, since she hadn't spent much time off the couch this week. Annie always knows how to cheer up her mom and dad and Thursday was no exception. After about an hour of walking and standing and working out Annie surprised us by going from sitting in a chair to standing up all by herself! Thank God for little miracles that keep us going!! She proceeded to do this 3 times! An absolutly amazing angel!

Friday turned out to be a beautiful 60 something sunny day so I had Annie play hooky from school and took her and Gracie to downtown Rochester to take a walk by the water. A beautiful end to a rough week. Atleast we can look back and see all the blessings that have come from our struggles. We hold on to the positive moments and they take us from week to week, month to month, closer and closer to our perfect day when we are cured!

We thought it was appropriate for Annie to wear her "got faith" shirt this week!

Annie looking at the river in downtown.

Gracie pointing at the "quackers" aka ducks.