I've said before that we don't try and think too far ahead when it comes to Emmery. I set goals instead. Since our last post my goal was to get Emmery gaining weight, drinking from something other than me, and becoming more mobile (crawling, stand ect). The last couple months I made those goals my priority. We have seen some amazing victories in the last few months.
Victories
Physically-
Her physical therapist felt she was slightly behind but had confidence she would start crawling any day. Well he was right.. she crawled three days later and has stopped moving since. She is even getting good at walking around the table while holding on to something. This is HUGE!! I have read and found that many children with Alagille's can be VERY underdeveloped due to their tiny bodies and lack of vitamins and strength.
Feeding-
The Occupational therapist gave me some great practice tips to help teach Emmery how to drink from a cup or sippy cup. Emmery has never been able to take a bottle or binky. I have been practicing with her every day and she is getting it down. She can drink from a sippy cup! BUT now the challenge is getting her to prefer that over breast feeding. I am currently still breast feeding her frequently and at night. She has also been doing better with eating real food without gagging and throwing it up.
Weight-
At her last GI appointment, her doctor was happy with her weight. She was 14lb 14.5oz and 25 inches long. She was at the 3 percentile mark. She would like her to be up a little more, but she said that was pretty good.
Appointments-
We met with her cardiologists as well and they said that the slight ballooning they did in her artery seemed to do a little bit to help. They are ok with waiting another six months before doing another echocardiogram.
In addition to meeting these goals, Emmery's personality has really started to blossom. She loves dancing, singing, waving and saying "uh oh!" She tries to keep up with her big brothers, which I think is the best therapy of all!
My next goal is trying to get her itch under control, get her sleeping and eating more solid foods. These have been our biggest struggles and defeats with her condition.
Defeats
Her itch-
Her itch seems to always be there, but some days are so bad that.. OH MY HEAVENS.. I want to scream to Jesus that we just want to give up already! Ok maybe, I do, for real, scream that sometimes... People, this is so hard to even articulate so you are able to fully wrap your mind around what this is like in our world. Some days there is no end. There is no nap, there is no rest, there is no bedtime or break time, there is no night time. There is no shower or conversations or catching up.
It is just one giant day of her crying and fidgeting. Our family has learned to just try and power through it. We can't stop life. Our older boys make this happen because they need us too. There's school and meals and playing and laundry and sports and attention that all need to be taken care of... we can't stop. But sometimes the never ending itch takes over our day and unfortunately everything gets put on the back burner. The boys have done so well considering the drastic change there life has experienced over the last year.
Can I just take a second too to say that siblings of special/high needs children deserve a giant parade! They are just as effected by these needs as the actual child that has them. They take the back seat at times so that she can be cared for. All eyes and attention is on her a lot of the time and they just keep loving her more and more despite what it takes from them.
Back to the itch...
She is always pulling at her legs and belly and sometimes her face. If any skin is exposed she manages to scratch it and cause it to bleed.
We will think we have it figured out with her medication, but then it will turn on a dime and her itch will be out of control again. It's so hard to understand what factors make it worse and what make it better. It's exhausting to try and figure out.
Right now she takes Hydroxizine, Cholestestiramine, & Ursodiol. She also takes a multi vitamin, Vitamin D, and an Iron supplement.
My goal is to figure out the right combination of meds ect. that will help her control her itch better.
Sleep-
Sleep, at night, has actually been a bit of a victory as well but 80% of the time it defeats us. We usually don't have a bedtime. What does that mean? Usually my husband or I will have her in our arms or trying to keep her happy while the other gets the boys to bed and settled. We usually then take turns with her until he falls asleep. There isn't the "OH THANK GOODNESS, ALL OF THE KIDS ARE IN BED WE CAN RELAX NOW!" I take on the majority of the night unless I feel like I'm going to loose my crap and I need a hand. My poor husband usually picks up this cue when he finds me crying in the fetal position in my rocking chair while Emmery is screaming her guts out. It's not a pretty moment, but it's the ugly truth.
Her scratches on her leg
So there you have it. She is drinking and crawling but itching and not sleeping. Pretty much sums it up... God has been with us every step of the way. Sometimes it's hard to understand or trust that this is what we have been dealt, but we hold strong to our faith. He will make something beautiful out of this mess.
Lastly, we have recently booked a trip to Washington DC in June to attend the Alagille Symposium. This is a three day weekend of classes and conferences with Alagille specialists. We will be able to learn about all the different aspects of Alagilles. We will also be able to meet other Alagille families. We are so thankful that this is available to us since it is only held every three years. We are a little anxious for the trip and all that it entails to plan and prepare but we know it will be so beneficial to us.
Please pray:
- That we can get a handle on her itch.
- That she can keep getting better at sleeping
- That we can keep her weight on during the transition to more solid foods
-Emmery's Mom
