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

Rare Disease 2016

 We greatly enjoyed it. I made new shirts for the whole family. Took treats into work and a sign to
help my co-workers know about the day. Once I came home we gave Squeaker her presents. Then off to dinner and bowling as a family.
We raised a little awareness about Rare Diseases and celebrated our
own little zebra. There was very little fighting, arguing or sadness. We just enjoyed our time as a family. It's days like today that make all the rough days. All the procedures, blood draws, and doctors appointments fade into the background. We understand that without all of that Squeaker wouldn't be healthy enough to leave the house but some-days it's just nice to not let the disease control our lives. It's just apart of it.

Time Flies

It's really late and I need to get to bed but I couldn't not post this.

I was making a collage of pictures for our Gastroenterologist. Tomorrow is our list time seeing him before the move. It's a little heartbreaking since he's the doctor we've had the longest. Not to mention how much of a driving force he has been in getting Squeaker the right treatment.

I decided I would make a card with pictures to remind him what much he has helped our Squeaker. As you can see she has grown up wonderfully. She is still skinny but puts on weight much easier than she used to. She sleeps better and the circles under her eyes are gone most days. I am continually amazed by her ability to love life one moment and the next be in full meltdown mode. I guess that comes with the 4 year old territory. oye...

Overall while sorting pictures and deciding what I wanted to use I couldn't help but be a little sad. Squeaker is growing up so fast. She always had a great personality but is now healthy enough to share it and tell us what she is thinking. Squeaker always wanted to be on the go and still does I don't know how she goes to far on so little sleep. Chemically I know it's the adrenaline in her system but I still think she is one of her super powers.

Mostly I was thinking about how much I love being her mom. Sure it's hard some days in general I love it. And honestly I love it more now than when she is an infant. Some of it I'm sure is there is less stress and more sleep. But I think a lot of it has to do with just getting to know her. The real Squeaker. Her thoughts, ideas, the stories she tells, and her laughter. What a sweet laugh to go with a sweet smile.

With all the crazy going on in our lives right now it was nice to take a few minutes and just remember how blessed we are. We have love, laughter, and a fantastic daughter.

Seriously, It's About Time

                                         It took 4 Years, 4 Months, and 17 Days think about that
                                                   4 YEARS, 4 MONTHS AND 17 DAYS!!!
     It took that long for Squeaker's Laryngomalacia to be resolved. That's right the LM is gone! GONE GONE GONE!!!! It is no longer swollen and it is no longer floppy. Squeaker was born with a moderate to severe case of LM. We chose not to do the surgery, okay I was scared out of it by a doctor. But any way she never had surgery, we treated with inhaled steroids and time. Knowing what

I know now I probably would have taken a different path but I can't change that now. It was hard a lot of days. REALLY HARD.
     It got very hard when at 12 months old when most kids with LM are just about out grown the issue and Squeaker was just as terrible as ever. We were still in the ER at least once a month breathing issues, its bad when the ER nurses know you by name. On top of that we were in the doctor's office about every 2 weeks too. We never had to be admitted for monitoring or spend time in the ICU. Thank-goodness Squeaker has my fantastic lung function and oxygenation.
    By the time Squeaker was 2 she was barley talking and having nebulizer treatments upwards of 10 times a day most of the time. It got a little easier when Squeaker was 26 months and started seriously talking. As she was able to start communicating more, which decreased the meltdowns. Which meant her breathing was more stable. Can you imagine being scared of your child having a tantrum because you fear they might stop breathing? How do you discipline a child that can't through a tantrum? I'll tell you it's rough and it takes a lot of patience. This year we did manage to have less ER visits.
     Just after Squeaker turned 3 we had hope again. Winter came and Squeaker stopped wheezing all the time. For 6 wonderful months there were no nebulizers, no inhalers, no ER and minimal doctors visits. It was blissful and we thought it was all done. Then summer hit. Ug we went from no inhalers to 10 times a day again. For Squeaker LM and Humidity never mixed well. We live in Alabama, you can guess that we have humidity in spades. We spent last summer inside. It was rough but breathing is more important. We even saw the ENT and he noted the LM was still present. Better but still there. uggg.

     It started to cool down for Squeaker's birthday and we were able to back off the inhalers. Breathing wise winter was just dandy. We kept up with the inhalers to help stave off infection and flu. It worked pretty well between the IGG therapy and inhalers we had very little illness. In the last couple of months I noticed that Squeaker stopped having stuttering breaths or stopping breathing while she slept. Of the years they had become less and less. When I thought out it I was hearing it maybe a couple times a month, and it was always when Squeaker was ill. Which every human does. Wahooo something normal. I also started to be able to use the humidifier in the house without Squeaker's breathing getting worse.
      Today. Today I took Squeaker to the ENT because she has been complaining for a sore throat for a long time. She also had a runny nose for a couple of months. It just didn't seem right to me. Well the ENT took a look with a rigid scope to see if Squeaker's vocal cords and airway were the issue. And they weren't they are perfectly normal. He thinks it's what is called an non allergen rhinitis. Which is a big way of saying her sinuses are reacting the pressure fronts and moisture changes. That means her poor nose is confused on if it is supposed to make mucus or not. He did suggest when we saw GI I next they may want to do a scope just to make sure their side of life is still in good order. Sometimes esophagus and swallowing pain can confused with throat pain. Especially when you have a little one who is still learning.
     So yup 4 years, 4 months, 17 days. Weighing it at 34 pounds and measuring 40.5 inches. That was when our first condition was resolved. My little Squeaker no longer Squeaks, and I couldn't be happier about it.

Toothless

Today Squeaker went to the dentist, Dr. Brandon. The dentist is never fun. Squeaker inherited my poor baby teeth. Combine that with teeth grinding, antibiotics, inhalers, nebulizer treatments and overnight drinking and well you have lots of teeth issues.

<--- This was while we were waiting for the medication to kick in.

This is how our day was supposed to go:
1) Stop liquids and food at midnight
2) Go to Dentist at 9am
3) Take the waking sedation medication
4) Wait and hour for Squeaker to get loopy
5) Get her in the procedure room
6) Start the nitrous oxide
7) Clean Squeaker's top incisors
8) Fit caps on incisors
9) Leave Dentist
10) Be home by 10:30-11 at the latest

     It was all great until Step 7. At that point the plan went out the window and we went down a rabbit hole.
     As Dr. Brandon trying to clean off the decay on Squeaker's teeth he started to worry about how much tooth would be left. He tried to figure out if he could even get a cap to fit. He went through what he had. I'm sure you have figured out that Squeaker is not happy about this. Poor Squeaker is being such a trooper. Even though she has been given a pain killer, nitrous oxide and Novocaine she was still uncomfortable and not afraid to let us know. Squeaker wasn't really kicking or wiggling but was pretty vocal that as she put it "I'm Done! I'm Done! I'm Done!". Poor Kid.
     After about 5 minutes of pushing and trying to get a cap to fit Dr. Brandon stopped and turned to me. He told me our options. We could try to glue the caps on but we would be replacing them in 3-4 months. We could try just cleaning and run the risk of further rotting, chipping, or abscess. Or we could pull the teeth. My heart sank. Dang it.... after a minute I just said, "Dr. Brandon I trust you. You do what you think is going to keep Squeaker's mouth healthy." I could see Dr. Brandon's wheels turning, then his shoulders dropped and his eyes got sad and he said "We should take the teeth. I don't want to but if we don't you're going to back here in two months doing something else to these teeth. Or worse we will have to go back to the hospital because it will be a more complicated procedure."
    That's what we did. The hygienist went and grabbed the tools needed. Dr. Brandon sat there with us and tried to soothe Squeaker while he waited for the tools. He was very sweet. Once we had the tools the teeth were out in less then 2 minutes. Squeaker was soooo not happy but the worst was over. After about 10 minutes of cool down time we were cleared to go pick out a toy and leave. We left at 11am.
     Stopped in at Kroger to buy ice cream, popcicles, and some other favorites for Squeaker. Then finally headed home. Gosh it was a long morning.When we got home Trey was a wreck over the news. Trey has naturally good teeth. I mean straight, clean, self healing. At 35 he's had all of 3 cavities I think. Watching his daughter have poor teeth has been hard for him. Feeling that he should have been able to prevent every filling, crown, and pulled tooth. He thought dental health was something that he could help control. He was terrified that at this rate she would lose all of her baby teeth long before her adult teeth came in. Once I reassured Trey that the rest of her teeth were healthy and that there was little or nothing we could have done he started to feel a little better. He really started to perk up once Squeaker started to eat 5 minutes later. She didn't eat a lot but Trey was happy to see that even with less teeth Squeaker wasn't going to change her life, so it shouldn't change his.
     The good news is with these teeth pulled all of the problem teeth are taken care of. She had 6 teeth pulled up top, and the top 4 molars have caps/crowns on them. Her bottom teeth and in perfect condition. Dr. Brandon said their isn't even plaque or tarter on them. He can tell we try our best but life and genetics were just against us. But by taking care of this now Squeaker's gums will be able to stay healthy and grow healthy adult teeth. And those teeth, my friends, are what she will have much longer. For now and the next few years Squeaker gets to be our Toothless wonder.

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!!!!!!!

We Are Still Here

So the last 6 weeks have been a little crazy, okay crazier than usual.

In March we saw Dr. King (Gastroenterology). Squeaker had been complaining of a lot of lower abdominal pain. Dr. King added another pain killer to her medicines. Then he ordered an abdominal ultra sound and a barium swallow to check intestinal function. 
The Ultra Sound came back normal. Which is nice. The barium swallow went well... but slow. I mean re...al.....ly slooooooow. For the normal person from the time you eat to the time your food is sitting in your colon is about 90 minutes - 2 hours. So the test usually takes 2 hours. Squeaker's took nearly 5 hours. Yes you read the right FIVE HOURS!!  Which is a crazy long time to hang around the lab and un-able to eat. This test did tell us the source of the abdominal pain. It's just her gut trying to work. So it's the same pain she has had her entire life now she can tell us about it.

IVIG Sub Q has been going really well. About once every three weeks Squeaker has a reaction to the treatments. Usually she will get really fussy, throw up, takes a nap and his fine. A small price to pay for overall health. Speaking of we are about to hit week 4 of being healthy. Yup sticking my child every week with needles is worth it for that!

During our trip to Indiana I had oral surgery. Just some gum tissue and jaw bone removed. It has been a issue plaguing me for years so I'm glad to have it done. I have been healing really well with no complications. A couple more weeks and all the internal swelling and joint pain should be gone. Just in time for summer to hit!

Well Trey was a sweetheart and brought home a Redbox that I really wanted to see and Squeaker is finally asleep.

Progress

There are times when Squeaker's progress is lost on me. I am with her 99% of the day and night. Which is great for catching illnesses quickly but sometimes I miss the awesome strides that she is making.
Well last week we saw the Pulmonologist (Dr. Makris). We have not seen him for heavens 6 months I think? The last time we were at the office we saw one of his associates. But boy was the Dr. Makris was just thrilled with her overall progress. He couldn't believe how healthy she looked, how she talked to him and even followed him to another room to get a sticker. All things Squeaker was not doing the last time. Not to mention 27lbs and 36.5 inches (yup half and inch taller) is pretty good for Squeaker. Other great news was Squeaker is officially off the nebulizer except for illness or emergency. WAHOO! 3 years I've been waiting for that news. 3 YEARS!!! And poof it's all gone. I was doing a happy dance at that one.
We did talk about Squeaker sleep anxiety which is... um... just not going to go anywhere until we can

communicate with her. So here is to the next 4 years of crazy sleep! doh... Oh well I'd rather know. Dr. Makris agreed to keep Squeaker on the Clonodine to help her sleep so the whole process what so stressful for all of us. Oh oh oh, another cool thing is Squeaker is on Medically Mandated Naps. I mean every mother's dream right? My child is required to take a nap everyday. I even have the medicine to help her fall asleep. Now it may sound a little mean to make a 3 year old nap, but Squeaker is far from a normal 3 year old. She has hardly ever slept the appropriate amount for her age, and shows signs of sleep deprivation. Even if she didn't because of the immune issues Squeaker's system is constantly under attack, and sleep helps the body fight back. So the chronically sick need more sleep. Oh course I love the idea of nap time because I get to nap too. After keeping this kids odd hours 95% of the time I really need the sleep too.

Sub-Q infusion is going well. I am not comfortable doing the whole process by myself. That's right I stick my child, twice, every week. It's a little sick to say I'm proud of it but if I'm not proud or laugh at it I'll just cry. And well since it's not something I can change crying doesn't do a whole lot of good. Squeaker has gotten the hang of it too. She doesn't throw fits anymore she just whimpers and pleads for me to take it out before it's all done. I just give her whatever I can to make her more comfortable and say "As soon as it's done." It's rather heart breaking but again I have no choice. So I choose to just deal. At least by me doing the sticking and taking out we aren't dealing with fear and anxiety of other people. All Squeaker complains about is it hurting. She fights me a lot less than other other technician for anything she has had done. I hope it's because she knows that Mommy won't do anything without a purpose. That she can trust mommy to only to what she has to do.

As for the rest of the family. Trey is half way through is first semester of grad school and is

maintaining an A in both classes. It's been a little hard for Squeaker having daddy gone so much but she is adjusting. Well we both are, but we are having a good time finding balance. Trey is looking forward to being done with Calculus, so he can hurry up and forget it. Trey also started a weight lifting program, it's his way of trying to get fit. Whatever works.

Me? Oh well I mentioned the mommy time, working out, regular showers, projects. It's been nice. This week I saw the orthodontist for my check up. Things are going pretty well. Most of the major moving is done, now we are working on creating a nice arch and mid-line alignment. It will still be another year or so but it's been worth it. My last cleaning I had no cavities, no gingivitis, and they could floss without my gums inflaming or bleeding. And I am far from a great tooth brusher. Braces are making a great difference for me.

The braces have exacerbated a problem though. My 12 year old molars sit right up next to my jaw bone, always have. It's just how my crazy mouth was made. You should have seen the x-rays when my wisdom teeth thought about coming in. Anyway as my teeth have straightened and lengthened around my jaw one of my molars has been pushed even further up against my jaw. Which has cause the gum to be forced over the top of the tooth and inflame around it. Which leaves me chewing my own gum tissues. Yes folks that is as nasty as it sounds. So I saw an oral surgeon he would like to cut out the tissue shave off some of the jaw one and sew it all back up. He hopes that will be the fix. But he cannot give me a guarantee of long term results. I could have the same problem in as little another year. Joy oh joy. But being an awesome guy the surgeon decided since he cannot guarantee the work that he would not charge me. He really hopes it will be the fix I need but he'd hate for me to go through the expense just to have it find another treatment in a year or two. So I will be having surgery the first week of April. I'll admit I'm excited. This has been a bit of a problem since I was a teen and this last flare has been so bad I'm ready to try anything. The surgeon did give me an antibiotic to help calm the inflammation down and get rid of the infection. This infection is so strange all of a sudden I'll find some thing in the corner of my mouth and I'll spit it out and I'll think, "I didn't eat that?!" So strange. Oh well the worst will be over soon and then I have a shot at it being gone for good.

Holy Cow it's late. I need to catch some sleep.

Infusion Fail

  In December the day after treatment Squeaker was grumpy, groggy and had terrible stomach pains. We called the Immunologist's office and let them know. These were not good symptoms for Squeaker to be having. It meant she was having a delayed reaction to the infusion. The nurse talked to the doctor and decided to change the infusion protocol and see how Squeaker did.
    A week and a half later Squeaker was on steroids and antibiotics for a cold, sinus thing. It wasn't fun but it was nice to have the extra protection while we traveled to see family for Christmas. Squeaker did great with all the travel, and managed to not pick any other bugs up.
   January 7th we had our second infusion, using the new protocol. It went really well, not nearly as rough on Squeaker. A little longer but she was happy the whole day, except for the part where they had to stick her twice. But otherwise infusion was just fine.
   January 8th turned out to be awful. The grumpy and groggy came back, which on it's own is pretty normal, but then it hit. The vomiting, just as Squeaker was passing out to sleep. Up came everything she ate that day. And I mean EVERYTHING!! Undigested chunks of mac&cheese, fries, chicken, bread, mucus, orange juice, just *shiver* everything. I have no idea where she stored that much inside her little body. But by seeing that things were undigested meant that Squeakers stomach was paralyzed. Paralyzed stomach is one of the worst things we have to deal with. It can last anywhere from 12 hrs to 7 days was our longest. When it happens you have to watch everything she eats. Foods have to be simple and easy to digest. Lots and lots of fluids and you have to be careful how much she eats, even if she is starving. The only way to know that it has passed is to feed Squeaker something heavy and pray it doesn't come back up. Squeaker never threw up again but the pre-vomit cough was still heard for three days after.

   Of course I called the nurse about this. She talked to the doctor and instantly it was decided that we were no longer going to be infusion therapy. We will be trying SubQ next month. SubQ is short for Subcutaneous Therapy. It is where instead of using and IV to administer the medicine it will be injected just under the skin so slowly dissolve and be absorbed into the system. 

Upsides To Sub Q
Doses are smaller. There are less reactions to SubQ especially in patients like Squeaker that doesn't tolerate the IVIG well.
More balance protection. The ups and downs of SubQ are almost nonexistent.
It's done at home. No more traveling to Birmingham at 6am.

Downsides to SubQ
It's done at home. A nurse will come out to teach us how to give Squeaker her shots. Oh fun! NOT!
More balance protection. It's more balance because it's more often, we are going from monthly to a weekly treatment. Blech.
Doses are smaller. Well maybe this isn't really a bad thing. It just makes me feel like if I screw up I've really screwed it up.

Boy the things parents do for their children.

Not Too Shabby

Today Squeaker had her first infusion therapy. (If you have forgotten what infusion is you can read here, here, here and oh yeah here.) And honestly it couldn't have gone much better. Of course she kicked and screamed while they put the IV line in. She hated having the syringe attached to IV line to open up her veins. After about 30 minutes they took off the syringe and put on the IVIG. Squeaker was able to take it at full run which meant that the vial was gone in a mere 2 hours :)

Then a 30 minute saline bag to wash out the line, 30 minutes of observation and off we went.

Talked to our primary care doctor today as well and it looks like we should be able to get infusion moved from Birmingham to Huntsville. That will save 1.5hrs drive each way. Yes I am excited about saving the gas money but not having to wake up at 5:45 to take Squeaker to receive her treatment.

What a Month

 We fought and beat two rounds of bronchitis. More importantly we have had a few "healthy" days in there. Which we just went out and enjoyed greatly. We taught Squeaker how to gather pecans, do split jumps and to say "I love you more". Sure our month was a little hectic but a lot of fun.

In other news I talked to the Immunology Insurance Coordinator, Jan, today and well she wasn't happy. Apparently the doctor never told Jan Squeaker needed to put through for IVIG therapy. So the process was never started. Jan told me she would get on it today and put it through as a rush order so hopefully we can have our first infusion in the the next couple weeks :)

On Thursday we have a sleep study for Squeaker. I was hoping to do one at home but since we are

seeing a new doctor he wasn't to try the hospital first. Our new sleep doctor, Doctor Roy is a fun guy. Not only is he best friends with Squeaker's Pulmonologist but he is open to real life. He didn't care that Squeaker and I still co-slept, and that if I say Squeaker is having hard time sleeping then she is. So if the hospital sleep study comes back normal we will do other tests. Wahoo! I love doctors that believe me.

Um yup that's it... short and sweet because well I want to sleep :)

It's Medical...

I tell ya this just sucked to read. I'm not sure why since the day before I went over this information with the doctor and it was alright. I guess reading it in black and white just made it so real. Then I made a bad choice and pulled out her testing order sheet. I almost always just toss those out so I don't think about it too much. Put that day I pulled it out and looked at it....

 

This just sent me into worst case scenario mode and I had to look it all up. 

IgG Subclasses- Immunoglobulin G has four subclasses. Each with their own crucial roll but when all put together IgG makes up nearly 75% of Blood Plasma serum (the part of the plasma that isn't water). As part of the immune system the IgG helps kill viruses, bacteria, fungi, and neutralizing toxins. IgG can also pass through placenta to protect and unborn child while their immune system is still developing.

Mannose Binding Protein- is a lectin that is instrumental in innate immunity. I'm going to make you look those innate immunity because it's an article everyone should read. It's really fascinating. :) 

Post Pneumococal Titers- 6 weeks ago Squeaker was given a Pnumonia vaccine and pre-titers were drawn. They took the post titers so they compare and see what her body did with the vaccine. The last time we did this test it didn't look so great. It's actually what put us in the immunology clinic. 

CH50- Complement CH50 is a blood test which helps us determine any protein abnormalities and deficiencies in the complement system. This is the test that we have run no less than 4 times already and according to the doctor will be running a lot. Because even after a 100 times it being abnormal it can come back normal. 

AH50- Tests and measures alternate-pathway function of the compliment system. Another test that will probably forever be run.

Now for Factor B Antigen and Factor B Function I can't quite figure those out yet. I know they don't have anything to do with blood type. It specifically relates to the function of the B Cells in the immune system but I'm not sure how. What I do know is that Dr. Atkinson said it is the most common cause of and IgG deficiency, but the IgG deficiency it's exactly common. Yeah.. a common cause for an uncommon deficiency.

In other medical news:

Teeth 3 and 4 were extracted without a hitch. Since there are now no top front teeth Squeaker is having to have her food cut up a little more, but she is a lot happier not having rotting teeth in her mouth.

Squeaker has broken the 26lbs barrier!!! Our little girl is 26lbs and 36in tall. I LOVE seeing numbers go up!

We have begun potty training. :) I know that's not entire medical but what has stopped us in the past was as soon as Squeaker would sit down everything would squish and she wouldn't be able to get the muscle to work. In the last few weeks it's all started working.. HOORAY! She still can't use an adult sized potty, even the potty seats are too big for her. So when we go out she needs a diaper, at night time and to go poop. But when we are at home she will wear underwear and even pants over the underwear and be able to go in her potty bench. We haven't had a single accident. Of course Squeaker has had great bladder control and awareness since she was bout 9 months old we just couldn't get the muscles to work.

Lastly this week we have been dealing with some stomach issues. Trey and I are thinking she picked up a bug somewhere and stomach just decided to stop working instead of dealing with it. It does that from time to time. It just means our days are filled with lots more fluids, bathroom breaks, and little eating. Night times bring stomach cramps, tossing, turning, overall sleeplessness. The upside is so far she's only thrown up once, and in general Squeaker is pretty happy. She is such a trooper :)

Flash Cards III

Did you know that action words are important part of language and speech development? I never would have thought it. It makes sense, understanding that there aren't just objects but actions. That opens up a whole new line of clear communication. Of course the reason I know this is because Squeaker needs help in this area. Action words continue to elude her almost entirely.

In an attempt to help Squeaker I made flash cards! This set has 40 action words. There are many more action words of course but this seem like a good start. ENJOY!

Action Words 1

It Really Works

I was raised by a woman who grew up in California in the 60s and 70s. No she's not totally left wing but she is very driven by homeopathic medicine. We saw doctors, treated with splints, antibiotics, and even immunizations, all be it not as many as the CDC would have liked. Before seeing the doctor we would have warts and ingrown toe nails dug out at home. Rashes were rubbed down with essential oils, chicken pox sent us into oatmeal baths, and when a sore throat hit lemon honey tea was our friend. Having balance was a great way to grow up for me and I've tried vary hard to do it with Squeaker.

Recently Squeaker has been acting like she had pain in her mouth. It started mid last June just before we got home from the "family reunion". Since she had a cold I just figured it was a sore throat. As she looked and acted healthier Squeaker was still grabbing her teeth a lot. On July 3rd we headed to the dentist. And guess what? Two more teeth need to come out. I asked Dr. Brandon, her dentist, if there was anything we could do to stop from loosing teeth. Obviously he mentioned that stopping the night time bottles would make a huge difference but for Squeaker weight and health far out weigh tooth loss. It's so nice

to have yet another supportive doctor. Sadly due to the type of procedure Squeaker needs she couldn't get a time slot until August 20th. BOOOO! The only way to get her in sooner would have been to do it at the hospital again which would cost me about $300. Doing it in office is $20. Money wasn't the only factor going to the hospital would mean general anesthesia. In office is a waking sedation, which is preferable.

We had been surviving on Advil at night for a while. 1tsp before bed made for much better sleep and happier mornings. After we found out the teeth was the problem we started doing 1/2 tsp before nap

This stuff is about $1 an ounce or 20 cents a teaspoon

too. Very quickly we noticed that it wasn't enough. Squeaker's sleep was very disrupted which turned into rough and long days. I called the dentist to see if we couldn't get some heavier medicine to help our poor little girl. They graciously obliged with a regimen of antibiotics and codeine. Which have been working great.... a little too great. Apparently Squeaker is like me and when she takes pain killers they make her feel good and want to do anything and everything. That means we are back to having a child that doesn't sleep.

First thing I did was go back to Advil during the day and once out for night Squeaker gets the heavy stuff.  Sleep returned to our lives. But days were still rough, and rightfully so. Remember the pain you had in your mouth before and or after you had your wisdom teeth removed?? That's what Squeaker is going through, only she isn't quite three and has no clue why she hurts and what she needs. I needed something else to help her during the day.

Sunday night I tore apart my Baltic Amber Necklace. For those who don't know Baltic Amber is a resin found in eastern Europe. When the amber is worn next to the skin it releases oils that work their way into the blood stream. These oils can be healing and pain relieving in most people. To read more about the history of Baltic Amber and it's uses head over here. Alright back to life.

I took apart my necklace and restrung it into two necklaces one for me and one for Squeaker. I have had some success with my necklace helping my Fibromyalgia, so I wasn't ready to give it up entirely. After Squeaker feel asleep I put the necklace on her and gave her the medicine. The night was great. A year of nights like that and by golly we both might feel rested. :) What took me by surprise was the next day. Squeaker was happy, awake, and calm. Now I know some of that comes from a good nights sleep but this is better than I seen her behave in probably a month. About lunch time Squeaker took of her necklace and put it aside. But still remained a happy girl, who wanted to eat. Not just soft foods what ever she wanted and no crying about it. Oh and by the way we had not given her ANY pain killers. By nap time Squeaker was still feeling so good she didn't want to sleep. I'm sure most parents would say just let her skip nap, yeah not happening here. When your child is that sleep deprived for that long you only skip nap when you absolutely have too. It took me holding her in a tight grip (not painful, just enough she couldn't get away) for about 10 minutes and she was out cold. And no she wasn't crying during that time, so it didn't wear her out. 3 hours later she woke up still happy. It was an amazing change from the days before.

At the Water Park Event Sponsored By Her Dentist's Office

The rest of the night was fairly routine and after Squeaker was out I put the necklace back on her and gave her the Codeine. Well the necklace came off in the middle of the night and due to stomach issues it was a little rough on the little one... okay on both of us. While trying to put the necklace on Squeaker after she was awake it broke, and today has been long. Even with pain killers she still has been sore, grouchy and very particular about what she has eaten. After a 3 and a half hour nap today which she feel asleep all on her own for, she was still a little grouch.

As of now I just need a clasp so I can make a new necklace for Squeaker. I'm not sure I can live another 4 weeks without that. Even if it only helps a little I'll take it. There are a lot of things in life we have to learn to deal with but pain is one I'd like to put off for my little girl as long as possible.

Well That Stunk...

A Day At The Botanical Gardens

Made an oh so wonderful trip to Birmingham today. Please note that is to be taken with extreme sarcasm.

Today we saw Dr. Atkinson, who is an Immunologist. We arrived late due to traffic, but thankfully doctor Atkinson is usually running late so it's not like it put him behind. The visit to the nurses station was kind of fun. Squeaker didn't fuss or scream. She stood on the scale, stood tall for her height, sat for her temp, and BP. She had a great smile for the nurses. Then the numbers came... BP was a little high but not bad. She came it at 36 inches, can you believe it Squeaker is 3ft tall. Then over course the number that keeps me biting my nails, the weight. 24.5lbs. My heart just sank. Both of the nurses looked at me sad what's wrong. I said, "she's lost." Both nurses shared a sad face. One of the nurses usually works in our Pulmonologist's office and was almost as heart broken as I was because she knows how hard every once has been.

Moving on. Sadly Dr. Atkinson did not have the test results back... well he had them back but from the wrong lab. Which meant he wasn't confident in the results. The were testing Squeaker's here. Squeaker's first set of results came back in the low normal range so Dr. Atkinson wants to see if is second lab got the same thing. Which meant we had to do yet another blood draw..... Oh and it gets worse.

Last year Dr. Makris did a test where he ran a specific blood panel gave Squeaker a Pneumonia vaccine and six weeks later tested to see how her system responded. That test is what triggered our trek into the world of immunology. Also it would hopefully give Squeaker some extra protection from Pneumonia it self. Well we are doing it again. Yes that means not only did Squeaker have blood drawn today she had a shot too. Poor kid. She was very sore from the shot and then had to be held down for lab work. I'm just very glad she is at the age where stickers can make some of the worst things in life okay.

Now I don't know what I want the test to show. If Squeaker's results come back better then we have

Playground Fun After A Long Day

no clear answers about what's going on. Then again if Squeaker's results come back the same or worse then we have a clue what is going one, but we have to deal with treatment. Which I'm told is a pain but very doable. I don't remember exactly what it entails but I'm not going to worry about it right now.
complement immune system. The Complement System is your base line immune system. This is part of the immune system that you are born with and does not change. Read more





On the brighter side Squeaker had a good sized dinner. A few bites of Chicken Burger, half of a larg fry, and half a vanilla milkshake. WAHOO!! By the time we got back to Huntsville it was 7:30 and Squeaker never had a nap. To keep her happy and awake I decided to take Squeaker to a park. It was a blast!

Now we are home, cleaned up and Squeaker is passed out on the couch. Okay so maybe it didn't stink that bad.....

OT, ST, and GI

This info is technically a couple weeks old but oh well.

  We had Squeaker was assessed for Occupational and Speech Therapy, (OT, and ST). It was no surprise that she scored behind. I knew that... anyone that spent time with her knew that. The good news is Squeaker isn't far behind but because 3-5 is where a lot of progress is normally made in Speech and Fine Motor Skills there is a concern that Squeaker would fall way behind. With therapy we are hoping to help push her to keep making improvements. If she catches up then great if she stays just a little behind that's okay. The big thing is to keep moving forward.

  Squeaker lacks a lot of hand muscle and has slight tremors. The big goal in OT right now is stringing. The therapist (Laura) wanted Squeaker to have beads with extra large holes that she could string on pipe cleaners. The pipe cleaners hold up on their own making stringing easier, but still building the skill. The beads that would work ranged in price from 30cents a bead to $1.00 a bead.


Not to mention that none of them were local so I was looking at a week before they even got to my home. I decided to make our own. With some coupons I went to the craft store and purchased some polymer clay (Fimo, Sculpey) and made my own. I played with textures, colors, size, and shape. They came out really good in my opinion. Squeaker took right too them. Then when we saw Laura the next week she was in love. Big holes, not plastic, lots of texture, and very colorful.

  In Speech therapy the current goal is stringing more words together. So anytime she says something to us in stead of just saying it back to correct or encourage pronunciation we have to add a word. Sounds easy right? Try it. If your child asks for "Milk" you have to say "Milk Cup" or "White Milk" or "Milk Please". In the moment it gets really hard. Especially when the child starts adding a word. Now they are saying two words and you have to say three back. Ack! Squeaker's big thing lately is she'll come up to you with her arms up and say "Carry". Well I say back "Carry Me." After a few times she started saying "Carry Me". Okay great now I add "Please". Once she said "Carry me please", oh heavens what do you say? Thankfully I thought of "Carry me please mommy". Squeaker doesn't have to say all the words to get what she wants. But by adding words she learns how they link together.  I have the distinct feeling speech is going to be the harder one to make progress at.

   We also say Dr. King in his new office! It's like heaven. Large play area out front with great toys. A lot of comfortable seating. Then in the rooms there were toys too. Oh and it's much easier to get too since I don't have to go downtown. WAHOO! It was a really great place. What made it an even better day was Squeaker weighed in at 25lbs. You read that right 25 POUNDS! That means since starting the Clonidine 2.5 weeks earlier she had put on almost a whole pound. It's amazing what sleep can do. We would love to continue to see more weight gain like that but don't expect it. I'm sure we will still see bumps in the road but man it's a start. Not much else happened at the appointment. It was mostly just a check up. He did want to check her thyroid again (spoiler it's normal). We don't have to go back until October unless we have an issue.

---So you know no only did Squeaker weigh in well but her height is 35 inches. Which means her weight, height and BMI are all right about 15% for her age. That is a pretty high percentage for her and it just makes me really excited. ---