Things have been very busy since I last posted. Gavin is recovering steady but very slowly. Zoe just finished her first full year of school! And Ailsa continues to grow and change so quickly it literally makes me cry sometimes.
Zoe Medical Update
Medically, Zoe has had some ups and downs this past while. Currently she has had either four back to back bladder infections (one literally right after the other) or one long infection that is not going away with oral antibiotics. This last one happened on Canada Day (July 1st) which meant driving back from Grandma's the morning after we arrived and spending the day in the hospital. We had gone to grandma's with the intention of spending four lovely days relaxing, not driving 3 1/2 hours on Saturday only to make the long trip again on Sunday! The culture confirmed that Zoe did have another active infection. Zoe is able to now tell us when she has pain which is great because it helps us get her treated faster. Last year (same holiday weekend actually) Zoe ended up in the ICU just because of an infection we did not know was there. So treating the infection quickly is key to Zoe not getting so sick. I now email Zoe's complex care doctor more than anyone else and routinely call him by his first name! He has been great at helping coordinate all of this. We finally have Zoe's lung infections and seizures under control so we hope to figure this bladder thing out. We go to yet another new speciality this week (nephrology) and hope they can shed some light on this problem.
The other medical issue which has been difficult to solve is going so much better- ZOE IS SLEEPING! We started a drug to help Zoe but I was afraid before now to jinx it by celebrating. Zoe sleeps awesome now!!!! She stills wakes sometimes in the night but she is calm and quickly gets herself back to sleep. No more listening to her scream for 4-8 hours a night! If your child is having difficulty sleeping and you think there is an anxiety component to it, just email me and I would be happy to share with you what we have done for Zoe. After 20 months of trying different things we are so.....no one word can actually express how relieved we are. Mostly we are relieved to see Zoe so much happier because she is not so exhausted. And these past four infections Zoe was able to recover more quickly because her immune system is functioning better now that she is sleeping. If you do not have a child who literally spends more time screaming, hurting themselves and/or running around the house than sleeping, you can not understand what a huge deal for us this latest breakthrough is. But I guess most parents can remember sleepless nights and every parent wants more sleep.
In the mean time, we have made Zoe having as much of a life as possible as our biggest priority. Well, really having us all have a life is the ultimate goal. Zoe is doing two weeks of camp which is actually run at her school so she very excited since she was very sad when school ended. We also hope to have Zoe start horseback riding therapy this summer. With money being a bit tight (every parent who has a special needs child is nodding their head right now and thinking, when isn't money tight?) we had to change some of our summer plans. We hoped to get to conference this year but just can't do it. This made us really sad because reconnecting to other 1p36 families would be great right about now. There is something really special about looking into the eyes of another parent who deeply understands what you are going through at times. But the hospital has a cottage set up that you can go to for free a week at a time. We did this last fall and it was great. So we will get to do a little family trip this year. The cottage was very relaxing last year, no cell phones, no computers, and no one was sick! So hopefully it will be the same this year. Oh but wait, won't Zoe's doctor miss my almost daily emails while we are away :)
Now, This is the Life
Easter Seals (which is a wonderful foundation) had a fundraising Regatta yesterday and asked that families volunteer to go on boats during the event. A chance to ride on a boat for free and get fed- sign me up! Originally it was just the four of us that were supposed to go but I hurt my back last week (yes, we don't have enough going on right now!) so we had grandma tag along to help with lifting. The girls had a great time and it was so fun to do something so normal for a day. None of us had ever been on a big sail boat- it usually takes six men to man this one although they did it fine with the four of them. The guys on the boat were super friendly and great with the kids. Zoe just laid back and relaxed the whole time. She even tried to help pull the ropes in when the guys were pulling in the sail. Ailsa looked like a little laid back sailor. She loved flirting with the guys and relaxing on the boat. It was really wonderful to have this relaxing day with my family. I try to hold these images in my mind when Zoe's fever starts or we have to see her go through yet another invasive procedure. I remind myself- these are the days that we are fighting for. This is why we are pushing Zoe and doing everything we can to get back to some sense of our normal.
This is the beautiful boat "Orion." Ailsa (always talking now) is signing "hat" which means "Hey mom, where is my hat? I am going to get sunburned out here!"
Zoe relaxing on grandma and daddy.
Sailor girl Ailsa watching over the horizon...or perhaps she was trying to count those pink umbrellas!
That precious Zoe smile! Translation, "Now, this is definitely the life for me!"