Summer to Fall

After several months without IGG she started to have terrible mood swings and anxiety. We chalked a lot of it up to her not feeling well without the IGG. It just kept getting worse and worse. Then we got a call in late August that her immunologist wasn't taking her insurance anymore, delaying the re-testing process. Since we couldn't count on IGG leveling Squeaker out we decided to have her see a therapist. We found a counselor that specializes in kids, and in a few weeks Squeaker was communicating her fears and needs to us better. Trey and I were better equipped to help her through her issues without constantly fighting. We still have have issues from time to time but we are much happier family by working together.

Fall started out pretty good. We celebrated Squeaker's 6th birthday. That was quite the event. It was the first time we invited friends. There ended up being 55 people that showed up!! A lot of that was adults but boy was it a party. At one point it got pretty noisy, common there was 55 people there, instead of melting down Squeaker grabbed her earmuffs to help block the sound. She kept them on for the rest of the party and had a grand old time. I was really impressed with her maturity to recognize the issue and cope with it all on her own.

A couple days later Squeaker had her 6 year check up. She weighed in at 41.5 lbs and measured 45.5 inches. Everything was looking good at the time, it was a nice easy visit. Next it was time to see the o the dentist. When I made the appointment the plan was to fix a cracked filling. It would probably be a soft filling since it was a baby tooth. When the dentist started to remove the old filling he saw a lot more damage than anticipated. A LOT more. Right then and there in the office Squeaker had a root canal and a crown put on. She was pretty miserable until

after she had a 3 hour nap. By the next day your would have never known she had a major dental procedure done. What a trooper.

There were a couple run in with sinus infections over the next month or so. In October we met with a Geneticist. And with the basic screening she is genetically fine. That doesn't mean there isn't an issue in her DNA somewhere but the most common chromosomes are in good shape. Which points to it being an immune system function issue. A few weeks later we met with the new immunologist and she sent out for a TON of new labs. She wasn't to figure out where the core issue is. We don't go back until mid January but that's okay. Having waited this long I'd rather see the testing process through before we go on IGG so that we don't have to but Squeaker through this ever again.

Why you may ask? Because it's sucked. Granted we've been blessed that Squeaker has been decently stable without IGG but right now we are back in the hospital. That's right we went 5.5 years without being admitted to the hospital due to illness and in 5 months we've done it twice. This time it looks like a respiratory virus is to blame. She's lost a lot of fluids in the last few days and it's taking a some larger doses of meds to keep the fever down. Given her history the doctors don't want to play around with it. Squeaker is currently here on a 23hr watch but if her fever won't stay down who knows what the will do. To top it off it's finals week for Trey. Thankfully his projects are team work and 99% done and I don't have to work right now. Still it stinks.

It Happened

The first part of July Squeaker was hospitalized due to an illness. It was the first time she had ever been put into the hospital strictly for an illness issue. As sad as it was to be there it was still a big win. We did 5.5 years without having to be held overnight, f due to illness, for an immune deficiency kid this is really big.

What happened was Squeaker had a wonderful (note the sarcasm) sinus infection for several weeks. She was on 2 rounds on antibiotics and on the last day, day 20, Squeaker was looking really well. No runny nose, no pain, and happy disposition. We thought we were in the clear. We were even on track to start the prophylactic antibiotic again later that week. That was a Thursday.

Friday morning she was fine. Then she went to lunch with Trey and didn't eat. When they got home Trey made sure she took a nap. A 5 hour nap later, Squeaker had a fever. 101 fever.... 20 minutes later it was 104. We gave her some meds and called the doc. Another 20 minutes her fever was down to 103. Finally talked to the doctor and it was agreed we had better head to the ER.

They thought about doing an abdominal ultra sound because she was complaining so much of stomach pain and just in tears. Not our normal Squeaker, even when she hurts. A chest x-ray, a bunch of labs, a dose of fever reducer, an IV and still having a 102 fever it was decided to keep Squeaker for a little while. While we were in the process of being admitted some lab results came back. She testing positive for Para-influenza 3. A human born flu for which there is no vaccine and the virus can live on hard surfaces for up to 10 hours. The biggest concern for Squeaker was that she seemed very dehydrated and that Para-influenza 3 commonly leads to pneumonia or bronchitis.Which Squeaker is pretty prone to get. If it hadn't been decided before Squeaker was most certainly staying in the hospital for a day or two. Alright so we are admitted and finally get settled into a room at 4am I think it was. I'm glad we all took naps that day. 

I Was Away, Overnight!

I was given an opportunity to go work an event in Indianapolis. Specifically the Indy 500. It would mean long days, short nights and being away from the family. It was the first time ever I spent the night away from Squeaker. Honestly the longest I had even been away from Squeaker before was about 12 hours. So to suddenly be gone for days at a time would be a huge change for all of us.

Guess what, we survived. It was hard, we had some challenges, and there were tears but we made it work. We learned that Squeaker wouldn't go into major meltdown mode. Which has been known to happen when mommy leaves.

Next step, Mommy and Daddy go somewhere together overnight. It will be quiet a while before we try that one but we see the light.

In other news, Squeaker is sick. Sadly being without infusion is taking a toll on her little body. We've

had GI issues come up we haven't seen in almost 2 years. Last week she started complaining of a sore throat, had cough, mild ear ache. Then Sunday mix in lethargy, vomiting and a slight fever we had a rough night. Monday we saw our family doctor she was hoping it viral but gave us a antibiotic if the fever went up, she was even more fatigued or symptoms worsened. The doctor was hopping we wouldn't need it but alas we did. Oh and Squeaker had lost weight just about 2lbs in one day. From vomiting and not eating I'm sure. Its just so hard to put on weight an loss is hard.

Hopefully she starts to feel better soon because next week we all head to Cub Camp. Squeaker is going to be attending their day Camp I'm working in the Kitchen and Trey is getting caught up on some school work. For us this is will be like her first day at Kindergarten. She will be on her own with kids her own age, but no family. Its a big deal, we are very excited

Changing, Again...

I am well aware that life is perpetual change. Most changes are small, some are very large and then there are the in-betweens. Where at the moment seem huge but really it's not so big. Or as I like to say, "At first it was life changing, now it's just life."

Small changes:
The weather is nicer which means it's time to climb the trees. This makes Squeaker very happy. Grumpa now calls her stuck-monkey. As you an imagine from time to time she gets in a spot she can't figure out how to get down from.

Poor Squeaker was waking up a lot of days with neck pain. One Saturday we spent about an hour trying out new pillows. Found the perfect fluffy, but firm, memory foam pillow. Since then we've been having to see the chiropractor less often. I was very thankful for the sale at Kohls that week. Making it a $12 pillow instead of $30.

Big Changes:
My new job. I worked at Churchill Downs for the week of Kentucky Derby. My shortest day was 8hrs. My next shortest day was 14hrs, the rest were 18hrs- 20hrs. I missed home and I was missed by Trey and Squeaker. The restaurant took me on full time after the Derby. My days are much shorter now but it is still a big change.

We are taking a break from infusion. In order to get new lab work, and check titers we have to stop he IGG therapy. The stuff has a 21 day half life which means a minimum of three months off. It will probably be 4 months once its all said and done. There is a chance Squeaker won't need to go back on therapy. These could be some very big changes.

The In Betweens:
Lots of medications. We've had some adjustments to medications the last couple of months. Each time requiring a change in routine. We quickly found a new normal with all of it.

Chores, chores and more chores. We are trying to teach young Squeaker how to be fairly normal. So she has chores and responsibilities in the house. Most are brush your hair, brush your teeth, get dressed, things of the nature. She is also required to fold and put her laundry away, empty the dishwasher, and set the table. These are all unpaid responsibilities. There are a few other things on her list that are harder tasks that if she does them we pay her 25-50 cents. These include but not limited to, sleeping in her own bed, making her bed and emptying the trash each week. Squeaker has had to learn some things, and do things when she doesn't want too. Overall she is learning about contributing to the household.

Last on our list today is reading books. For ages Squeaker has had very little interest in books or stories. I think she didn't like them because in order to read you had to sit and slow down. Slowing down made her sleepy and sleep is a scary thing for her. Well in the last couple of months Squeaker has started to like reading and being read to. Much to my delight she enjoys listening to me read Harry Potter to her. Trey bought me the illustrated copy for Christmas and Squeaker likes to see the colorful pictures. The downside to her love of the story is we read very little at a time. Just before Squeaker falls asleep she likes me to stop reading, that way she doesn't miss any of the story.