In 4 days...
It will be one year ago that Willow had her first surgery. I know, I know, I have already done a one year recap and she is doing phenomenal ~ I do not take it for granted and I still rejoice in all that she can do and do not dwell on the things she can't (like speak verbally, instead I just focus on teaching her a new sign! :) Yes, she can sign words! She is up to now.... had to think... I believe 6 that she knows quite well and a few we are just working on. She can sign mama, dada, eat, more, all done, bird.... Learning don't hit, brother and sister. I will not say that I am a pro at this sign language thing, but I am thankful for a smart phone with great apps! LOL
So she has completed 12 surgeries already as well, and this week we are having an ultrasound of her stomach done as we found that one of her incisions has developed a bit of a hernia I guess. It is poking up a bit more than it should. Some days it looks much better than others, and we don't see a reason as to why it would change. And honestly the NS was more worried than we were, so here we go again... Maybe a 13th surgery this week. :(
She has also been referred to and has the appointment date set for a trip to the infectious diseases doctor. May 29th is our date! Hopefully we will find some answers for this pesky unknown fever dance she likes to do. So far the highest in the last 3 days it has been is 99.7; which as a refresher for my friends is really 100.7 as her body temp is normally 97.7. So even her NS agrees that even if the thermometer reads 99, its really 100. Ugggh seriously?! Generally I have to call and take her in to the ER when we reach those temps, but unless it is also followed with vomiting, (which so far this weekend we have been vomit free) we are to just watch and wait it out since there seems to be no other logical reason for this fever. So we now just wait until the end of March.
On the upside of things, she has gotten to go and play outside a bit this weekend and as Jon put it one day looking at her giddy as a school girl and squealing with delight, "she is in awe of the outside world". :) She LOVES to be out in the sunshine, and walking around with her siblings. I cannot wait to get her out to the park this summer and the beach, and the lake.... Okay one day at a time I know... :) Regardless, I see a great summer with some great friends on our hands this year! I cannot wait, and if it means Willow gets to play outside, I know she is happy with it too.
So she has completed 12 surgeries already as well, and this week we are having an ultrasound of her stomach done as we found that one of her incisions has developed a bit of a hernia I guess. It is poking up a bit more than it should. Some days it looks much better than others, and we don't see a reason as to why it would change. And honestly the NS was more worried than we were, so here we go again... Maybe a 13th surgery this week. :(
She has also been referred to and has the appointment date set for a trip to the infectious diseases doctor. May 29th is our date! Hopefully we will find some answers for this pesky unknown fever dance she likes to do. So far the highest in the last 3 days it has been is 99.7; which as a refresher for my friends is really 100.7 as her body temp is normally 97.7. So even her NS agrees that even if the thermometer reads 99, its really 100. Ugggh seriously?! Generally I have to call and take her in to the ER when we reach those temps, but unless it is also followed with vomiting, (which so far this weekend we have been vomit free) we are to just watch and wait it out since there seems to be no other logical reason for this fever. So we now just wait until the end of March.
On the upside of things, she has gotten to go and play outside a bit this weekend and as Jon put it one day looking at her giddy as a school girl and squealing with delight, "she is in awe of the outside world". :) She LOVES to be out in the sunshine, and walking around with her siblings. I cannot wait to get her out to the park this summer and the beach, and the lake.... Okay one day at a time I know... :) Regardless, I see a great summer with some great friends on our hands this year! I cannot wait, and if it means Willow gets to play outside, I know she is happy with it too.
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