Tuesday, May 20, 2014

Details

As promised the details of our lives,

The last few weeks have just been a blast. With Squeaker healthy we have been able to do so much. We went cosmic golfing, bowling, a family reunion, and A LOT of playing Wii.

About a month ago Squeaker discovered she now had the muscle tone and control of her fingers to
play the Wii. Yup go ahead and judge us for being awful parents to let our 3 year old play the Wii for more than 15 minutes a day I don't care. It started as a nice indoor activity for what felt like two weeks of rain outside. (If you don't know the pressure changes that come with rainstorms make me hurt and pretty useless). Then we started to see her fine motor and hand eye coordination improving. After about two weeks I started to notice she was playing too much and didn't want to do anything else. So we took a break and showed Squeaker what else she could do with stronger hands. It's no longer and addiction. It's back to being something we use when Trey and I are both tired and need a break.

Cosmic golf is a blast with a 3 year old, provide you have patience. Squeaker loved the way the colors changed in the light. She also loved putting the ball about 8 inches away from the hole and hitting it in. I have to admit if she didn't make it from there she would go and try again from the same spot. She tried really hard to work on getting the ball to do what she wanted with the club. It was also the same day I got my new phone. A Samsung S5, yes I'm in phone heaven. :)

We went bowling about 4 times over the last couple months and countless games on the Wii. Squeaker is a natural at real bowling. With bumpers but no ramp she can score in the 40s no problem. She has even gotten a few spares and strikes all on her own by carefully planing where to puts the ball down and how to push it. We found out about Kids Bowl Free. Where you find the local bowling alley when their free kid bowl times are and register your kids 15 and under. Each week you will get and e-mail with your coupons for each child to have 2 games everyday! Then you can buy an adult pass that you can put 4 names on and for $25 each adult can bowl two games each day with the kids all summer long. You do still have to pay for shoes. But even if you go twice as a family the pass will have more than paid for it's self. I'm thinking of investing in shoes for our family since Squeaker loves it so much. Plus as in indoor activity I don't have to worry about her heat intolerance.

Right before we left of Kentucky Squeaker's heat intolerance showed up again. In the lovely Alabama
way we went from rainy and chilled to 80 degrees and humid. Poor Squeaker was squeaking and wheezing like crazy. So back on a controller medicine she went, and an oral steroid course to get her on track. Bummer... I thought we had beat this. Apparently it was just the cold giving me false hope. Oh well.

Trey's brother Lee recently returned from a 9 month deployment on a navy ship and for some R&R his family decided to head up to Kentucky and see the family. Trey took some time off work and so we had a little family reunion. I say little only for the sense that it was just a BBQ planned on short notice. When you get 6 siblings, 5 spouses, Trey's parents and grandmother, and then add in 18 kids... that is 32 people. Things are never small with a crowd like that. It has been 4 years since we were all together in one place. That was one marriage (Lee and Dee) and three kids (Squeaker, Naomi, McKinley) ago. It was a crazy few hours but man a lot of fun.

Sadly Squeaker took away a few more germs from the party than she could handle. With traveling her breathing still wasn't balance, even with a second run of oral steroids. But a day or so after she really started to show signs of not feeling well. She perked up just enough to pass her physical and have dental surgery. Then down hill it went and fast. Monday morning Squeaker actually asked me "Go bye byes, doctor, feel better?" Can you guess what we were doing a couple hours later?

At the doctors I had to twist the doc's arm to get Squeaker an antibiotic. I told her that Squeaker had had this junk for about a week and trouble breathing a week before that. So I tried to let her get rid of it but it's not happening. The doc (a random resident on the cough and cold call) kept nodding her head and saying "I understand" and I explained that with her immune deficiency she can't fight off things. I had her history binder there and showed her. Again "I understand, no problem. " The doctor looked at Squeaker and said, "Yup she has that sinus junk that is going around. Non allergy congestion usually takes about 3 weeks to clear. Since she is deficient she will need extra time. Come back in three weeks if she isn't better we will give her something." I about yelled at her to go get the attending. Instead I calmly said "She needs treatment now." It wasn't until I got the doctor to look at Squeaker's history and the fact that she takes a prophylactic antibiotic did she realize I knew what I was talking about. She started muttering something about if your on a prophylactic antibiotic you shouldn't get sick and if you do it's and issue. Gee ya' think?? We see the immunologist later this month. I plan on getting a letter from him stating the treatment procedure so I don't have to do so much fighting.

Thus ends 8 weeks of wonderful health. But on to summer we go head strong and full of hope. WAHOOO!!!!!!!

Friday, May 16, 2014

BEST NEWS!!!

Squeaker had oral surgery today. Nothing too major just some caps, crowns, fillings, xrays and a full cleaning. Just much easier to do all of that when she is out. And I'll give a full details of our lives later. But right now I'm too excited about something we found out today.

Squeaker has GROWN!!!! I mean not just a little, A LOT!!!! In the last two months Squeaker has been the healthiest she has been in a long time. And 8 weeks is the longest stretch of healthy we've had in ohh.... ever I think. And guess what happens when Squeaker is healthy? Yep she grows! You ready for the numbers???

3/14/2014- 27lbs and 36inches
Today----
29lbs and 39inches!!!!!!

Yes you read that right. 2lbs and 3 inches!!! I knew she was a little heavier and most certainly taller but wow! This morning you could have knocked me over with a feather!

I know the infusion has been making a big difference, even if there are some side effects some days. But boy oh boy it is very much worth it to see growth like that.