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 Day Sign

I made this sign to go with the treats I'm taking into work tomorrow.

Something Normal

   Once and a while something "normal" happens. This time it was lost teeth. Squeaker has now lost two teeth a completely normal way. They went loose and then came out.
   The first one was a big surprise. It was about a month ago and I was getting ready to leave for work

and Squeaker came down saying her mouth hurt and it was wet. I look at her mouth and a bottom tooth was gone. My response was "Oh my gosh you lost your tooth." I asked Squeaker what she did with it and she said I spit it out in my room. Sure enough we go in there and on the floor is her tooth.
   What made it even funnier was I had to look up what a normal lost tooth looked like. All of her other teeth were pulled. Leaving large holes in her gums and giant roots on the teeth. This looked very different. It was normal... so strange.
   Then it happened a couple again a couple of days ago. This time we were prepared. We watched the tooth as it progressed. Watched it loosen and move around in her gums. Then "pop" it came out. A lot less blood this time. Squeaker even called me at work to let me know it happened. She really is adorable.
   Our life usually anything but normal. Which makes us appreciate the little "normal" things that happen.

Throw Back Thursday

Facebook and Time Hop Apps like to remind you of the past. I think it's pretty cool to know the exact day something happened years ago, or to see trends over the past few years. Today I was reminded of a very important day in our past.

5 years ago today Squeaker was diagnosed with LM. She was 2 months old. Every breath she took she made noise. She couldn't keep food down. She didn't sleep for longer than 2 hours at a time, and would be up for an hour before going back to sleep. She wasn't putting on much weight less than 3 pounds since birth. We had seen her pediatrician almost constantly trying to figure out what was going on. Finally on this day we saw the Cardiologist and Pulmonologist. The Cardiologist did an Echo, and her heart was perfect. A few hours later we met with the Pulmonologist and withing a few minutes of walking in the room he had Squeaker diagnosed. A few minutes after that we had a treatment plan. For the first time I had a real answers. I knew it was far from over and done with but I felt like I could face it.

This memory is very important today. Today was the first time, the first November 5th that LM has not been a part of our lives. In January I wrote about the resolution of this condition. Need a refresher you can read about it here. I look at the picture of Squeaker when she was 2 months old and I see so much.

Her sweet little smile, and big brown eyes. Which reminds me how much I love her and although she struggled how sweet of a baby she was. I also see the swelling and darkness under her eyes, and it makes me sad. To think at a such a young age she was already sleep deprived and unwell. In my head I can still hear the gasping sound she would make while she slept. Maybe someday I will forget it. For now I am content that I don't have to listen to it in real life anymore.

As I type Squeaker is laying next to me in and out of sleep. Even though she is sick her breathing is quiet. Not just quiet but silent, I can't hear her breathe. I can see it. I can watch her chest and shoulders move but there is not real sound. Silence never felt more golden.

Wowza!

It has been 30 days since my last post and boy what a time we have had.

It started off with a miracle. We were told that Squeaker qualified for 1 free month of Infusion

 medication. We had applied a couple of months ago to the IGIQ program and we had received a letter saying that she wasn't approved. Then one day out of the blue we get a call asking us where they can send her medication. Trey spent two days and many hours figuring out where it could be sent and getting updated information to the company sending the medication. It was shipped to a local specialty pharmacy where all we had to do was walk in and pick it up. AMAZING!! We started to see improvement within a few days. Sadly we also saw it wear off early because it is still building in her system. But each week we get a little better. Squeaker's insurance also was approved a couple weeks later. The people at IGIQ are helping us get the medication with her insurance. Talking to the specialty pharmacy, and the doctor for us. Hours of work we don't have to do. It is wonderful.

We also had the big yard sale. The neighborhood has yard sales twice a year. And because it's the
whole area lots and lots of people come. Sold most of the stuff we don't need anymore and put a lot more out in the trash. Made some money and had a lot of fun. I'm just glad that all our stuff has gone to loving homes.

I had a grand adventure. I spent TWO whole days immersed in Harry Potter. The local Science Center had a Harry Potter movie marathon on their 4 story IMAX screen. Trey bought me tickets to go by myself. Saturday was movies 1-4. It was a lot of fun, but boy

at the end of the day was I mess. **Spoiler Alert** Cedric Diggory still dies. Every time I watch the movie or read the books some part of me hopes maybe this time he won't die. I know it's crazy but I just love the character so much. Sunday we watched movies 5-8. Yup. Not a dry eye in the place by the end of it. When the final movie ended you wanted start all over. Yes we were all that crazy. We also had costume contests, trivia, and general discussions about the books and movies. It was a lot of fun. I hope they do it again in a few years when maybe I can take Squeaker or a friend.

The other big thing was I made Squeaker's Halloween costume. It was much easier than I had anticipated. A LOT easier. It took only about 5 hours to lay out, cut, and sew. I keep thinking I missed something or it will fall apart. But so far so good.

Here's to continuing finding the good in the world.

I Almost Forgot

I almost forgot how rough life was before infusion. Okay so I didn't really forget. I remember being exhausted. I remember countless doctors visits, and driving a lot. I remember feeling like nothing and yet everything was happening. But what I did forget about was the fear.

Maybe I didn't realize it at the time. I was afraid all the time. Afraid of germs, afraid I could give the wrong dose, afraid I would miss a doctors appointment, I was even afraid I wasn't counting all the calories she was eating. You name it I probably was afraid of it. I've started to notice those feelings coming back. I'll tell you it's not helpful at all! I don't know how I lived like this for years I'm sure. Poor Trey what a mess he had to deal with.

After we started infusion these fears started to go away. Squeaker wasn't sick every single day. Which made me feel it was okay to go a day or two without waging war on every germ in my house. We weren't having to see a doctor every 2-3 weeks, which was very freeing. And then a few months in Squeaker started putting on weight, and I stopped counting calories.

Since it has been about 2 months without infusion slowly but surely the fears have been coming back. At work I constantly am cleaning my hands and my desk to make sure I don't bring any germs home. I worry about when I can get in to see the doctors, and I am paying very close attention to what and when she eats.

Thankfully this time around I'm recognizing the signs and how irrational it is. I can't make it all go away but this time, this time I will keep it in control. I will use everything I have to keep the fear at bay. I will rest, I will take time to relax, I will prayer for strength, I will voice my concerns to the family, and I will not let it run my life.

Survival

I See Blessings Everywhere
It is the only way I can survive. Life is hard. In the best of times life is hard. But you have to find ways to enjoy it. I like to look for blessings.

It's been about 6 weeks since Squeaker has had her infusion. She is having a hard time sleeping, and is achy all the time. Even with pain relievers and sleeping medication Squeaker has a hard time falling asleep, staying asleep, and wake early in the morning. The blessing in all this? It didn't start until my shift at work moved from 7am to 9am. 2 hours may not seem like a lot but when you are up until 2am those extra hours are very helpful.

Trey was slowly running out of his medications because our insurance hasn't kicked in yet. Sadly just a few days without his medication and the vertigo and headaches were coming back and fast. We just decided to talk to the pharmacy and see what cash prices we could get. Our blessing? That day a new discount card came out and we were able to get both medications, 90 days supply for about $60. Not as cheap as a copay but do able. Very do able.

Sunday night I was on the brink of tears. Just worried, tired, and stressed about how I was going to keep being a working mom. All I wanted to do was stay home and take care of my little one. I feared I wouldn't be able to do the job. Then to come home and take care of everything I needed too. I was worried sick. What blessing did I find you may ask? I realized as much as this may suck I had a job. A job that was close to home, with decent entry level pay, and allowed me to be home during the evenings so that Trey can go to school.

Without the silver linings life is dull, irritating and a pain. I have found that if I can find a few happy things, or blessing everyday then I can make it through. Because life is hard. I can't state that enough. But it is also amazing and worth getting up for everyday.

She's Given Them Up

     Squeaker officially gave up her bottles today. Yeah, Yeah, Yeah.... a 4 year old has no need to use a bottle, I am destroying her teeth by letting her use a bottle, 4 years old is WAY to old for a bottle how did you let it go that long? So this isn't a big deal, she is 4. Well guess what this is a big deal for OUR 4 year old.
     What makes it even more awesome is it was her choice. We've been working for months on getting Squeaker to give up her bottles. But to her they aren't just bottles. They are security. Taking away her bottles is the same as taking away a child's toy or blanket that they sleep with all the time. We didn't want to just rip it away from Squeaker. We were trying to use less and less bottles. We'd make her wait certain times before giving her more. It's been a struggle. But little by little it's been getting better. The last month or so we've been offering to buy her a new a new cup or bottle for night time. We aren't opposed to letting her have something to drink during the night it was just time to move on from baby bottles. Well today she did it.
     We were at Wal-Mart and I decided to take her by the water bottle section. Just to see if there was something she wanted. As usual she found a bottle she liked. I told her the deal was I would buy her the new Elsa bottle she wanted but she would have to give up ALL her baby bottles. Usually at this point Squeaker gives back whatever she has picked out. Then tells us she will stick with her baby bottles. Today she didn't. I checked with her several times. Making sure she understood the commitment she was making. I even said we were going to go home and throw out all her baby bottles. There was no going back.     
     Once home Squeaker wanted to gather up all her bottles and throw them out. We did and as luck would have it is trash night. She even helped me take the bag to the curb. And when it came time for bed she wanted her new bottle and we snuggled up. No fuss, no fight. She has even had one wake up so far. She didn't ask for her baby bottles, she just wanted a quick drink, fussed for a few minutes, and then back to sleep.
    I'm still in a little shock and awe of how quickly this happened. I mean it shouldn't, Squeaker has always been one that once she decided she was going to do something she did it. Today was the day she gave up baby bottles.
   Time to get back to work. Moving day is in 5 days!

If Medical Issues Were College Professors

A few days ago I was thinking about how we just can't seem to get rid of the Reactive Airway Disease. For some reason my brain started comparing medical issues to college professors. This is the conversation I came up with. Yes I know, I'm a little strange. ENJOY!


Me: Well Hello Professor Reactive Airway Disease. RAD how are you doing?
RAD: Hello LR. I'm doing well. Glad to finally be here.
Me: Did you have a good winter holiday???
RAD: I did. It was nice to kick back and enjoy some family time.
Me: That's great.  Winter was pretty calm around here. Had to handle a few problems from the GI Department. Professor Gastroparesis decided to shut down the department without telling us. Caused some communication problems that set us back a few days. And of course Dr. Hizentra. For a Professor that only works one day a week she sure can cause a lot of problems. Two weeks ago she even had a breakdown. It's hard to lay the blame on her.  As I'm sure you remember that getting the Immune Department to do anything is nearly impossible; and she can only get in the lab once a week. I'm sure it's stressful. But honestly there wasn't much out of the ordinary around here.
RAD: Well I'm glad to hear your break was normal. But I'm ready to start the new semester. I have big things planed.
Me: You're ready to get back to work you say? Well... um... the Medical Board wants to close down your lab.
RAD: Why?
Me: Well with Professor Laryngomalacia gone we figured you'd want to move on to. He was your mentor. And a real force for disruption. From the very beginning he just kind of barged in and set up his lab. The Medical Board just figured we could close down the Disruption Lab and let the Respiratory Department run its self. After 4 years the Respiratory Department has a learned plenty about handling disruption and difficulty.
RAD: I think I have a lot to teach them without Dr. Laryngomalacia. He focused a lot on the upper airway. I want them to learn disruptions in the lower airway. Maybe even work more with the sinuses.
Me: We were hoping to let the athletics lab expand. And Lower Airway Disruption Lab will really slow down their work.
RAD: It's true that Athletics Labs and Disruptions Labs rarely get along. And Dr. Laryngomalacia was very hard for to work with. Especially for the Athletic Lab. Even the GI Department has issues with him. But I think, no, I know I can do better.
Me: I'm sure you can. Many places have dual Disruption/Athletic labs. But we aren't sure that we want to go that direction.
RAD: Well. I have a 5 year contract and I'm on track for tenure.
ME: That's true. We were thinking maybe you could take a paid sabbatical for the next year. Till your contract is out. The Medical Board is thinking that allergies maybe coming, and you could work in their lab. If we can get the Immune Department up and running properly I'm sure we will still need a consulting Airway Disruption Lab. It wouldn't be full time but it would be steady work.
RAD: You know as well as I do that Disruption Labs are getting harder and harder to find. Especially ones as active as this one. This Lab has slowed down some but there is still daily work to be done here. It is fantastic for training and research. In short I deny your offer. I will stay. I've made up my mind. I had all winter to think about it. I'm ready to take over the lab on my own.
Me: You know this will upset President Squeaker and the Medical Board. They had plans to spend more time with the other departments and working out their problems.
RAD: I know but I love it here. I think there is so much I can teach and do. I know I am probably your least favorite Professor but I am very good at what I do. And I want to keep doing it.
Me: Well. Okay. Then can ask a personal favor?
RAD: Sure you can ask.
Me: Please work with the athletic department.  President Squeaker was really looking forward to a full and active summer. And well, since she doesn't really understand your department I'm the one that gets yelled at. I know that the yelling can expedite your research it is hard on the rest of us. So please try to work with them.
RAD: I'll try. Promise.... now let me tell you about my plans for the up coming semesters.
ME: Ya know what. I think at this point I'd rather it be a surprise.
RAD: Okay. Fine by me. But it's going to be a great summer. I'll see you later.

Pure Crazy

I have to say I'm pretty impressed that it's been less than 30 days since my last post. It has just been so very crazy around here. I kept meaning to sit down and post things. Then I would get distracted with life or doing things. Like sewing a new dress for Squeaker. That's right I made that dress!! I'm proud of it. It has appliques, trim, hand beading, binding, an invisible zipper and it is fully lined! Yes dear friends I move truly moved into the world of being a seamstress. I can't design or pattern very well, but I sure can cut read and alter a pattern if needed. Oh happy day!

Squeaker has been pretty healthy. Sleep has started to go back to normal, when we can stay on schedule. The last couple weeks between doctors and travel we have missed a lot of naps. And it has been rough for all of us. Squeaker has been a pretty good trooper about it all but it is rough. This last Monday the tubing broke on Squeaker's infusion. By the time I got the pump stopped almost 2/3rds of her dose was gone. I talked with the pharmacy and they talked to the doctor. We decided since Squeaker has been healthy that we will forgo and extra infusion and just wait until next week. This morning Squeaker woke up sick-ish. Groggy, didn't want to get up for over an hour. She was pretty happy during the day but a stuffy nose and easy meltdowns but we survived. Squeaker will probably get sicker as the week goes on. If she gets too bad we may have to move infusion for this week to Sunday.

Trey is more stable but in his head he is still very dizzy. He has been wearing glasses that help block

certain types of light and hats to minimize the light that gets into his eyes. It seems to be helping a lot keeping the brain in check. Trey still walks with a cane, but relies on it less. We were up in Indiana for Spring Break and had a chance to try some acupuncture. It seemed to help too. It will be a while before we can go back. Yes there are acupuncture clinics where we live but they are more expensive. While we were visiting family we found out that not only did the short term disability get denied but Trey lost his job. We are working on a plan to stay here and have Trey finish is MBA. There just need to be a few ducks that line up for that plan to work. We know if our plan is right the Lord will help guide us.

Today was a wonderful southern spring day. We cleaned up some brush in the back yard and I mowed the lawn. Hopefully in the next week we can clean up the garden patch and get a garden planted. I swear the best way to treat stress, anxiety, and depression is service for others and gardening.

It's Just A Lot

Quick update and then I'm off to bed.

Trey has been in a specialized physical therapy program for 4 weeks now. And although he still feels like his brain is on the ocean he can walk in the house without a cane. Once out of the house he is supposed to use the cane because in less familiar surroundings you use more of your brain. We acquired a temporary Disabled Parking Permit for him. Especially when he has to drive himself to class. Yup Trey is still in grad school. We looked into pulling out for the semester but it was too late. It's been an adjustment in study habits but he is making it work. We have also started tracking calories, sodium, and sugar intake for the both of us. Not only is this helping us both stay on track about loosing weight but we can show all the doctors the sodium and sugar intake for Trey. Yes, they ask about that stuff.

Squeaker as you may have read is no longer squeaking. Looking back over that last few months though we have noticed she has been talking more. Sadly some of that talking is arguing and poor attitude. Hey she is 4 it was bound to happen. Sometimes it's kind of funny because she will try to take away our privileges when we don't do exactly as she asks. Sorry kiddo, that's just not how it works. Our biggest struggle has been when she gets hungry. Food can still be very painful for Squeaker so getting her to eat is a struggle. But if she doesn't eat oh my that's a horrible struggle. Trey and I have chosen our line in the sand and there were stay. We know it will get better and being a consistent parent is hard but we know it will pay off in the end.

As for me. Oh well I'm busy. If you didn't figure that out already. I am doing 99% of the driving, I try to entertain Squeaker daily so Trey can study. I try to keep laundry moving and cleaning done. I do the cooking, figure the calories, and pack up all the leftovers. I've also starting doing some testing site stuff to help earn a little extra money. Currently Trey is on short term disability insurance which is wonderful. But is getting to the point that it only pays 60% of his salary. I'm very happy it pays that, but it does leave us a little short every month. We have some savings but it won't last forever. I just figure if I can start now the longer the savings will last. I would love to pick up some work at home data entry. There are jobs out there but where Trey is not able to care for Squeaker, and do his rehab, I can only work during the night hours at home. In the future I may need to take a late night shift outside the home but we aren't there yet. Oh and to top it off I'm on day 3 of 5 of an antibiotic. I have a sinus and respiratory infection.

Which folks just proves how awesome my husband is. Trey has a lot going on. I know that chronic vertigo doesn't sound like much of a diagnosis but it is really hard to constantly feel like you are falling over. While I've been sick Trey has just been doing as much as he can. This weekend when he didn't have to study he's been letting me sleep. Since I still sit with Squeaker to put her to sleep he makes me warmed caramel milk and brings it to me. Then tells me "When she is asleep your bath will be ready." I mean honestly does a hubby get any better? He's just so awesome.

Well that's the update. I should get some shut eye. We see the Neurologist tomorrow afternoon. We aren't expecting much in the way of answers, but maybe a few ideas of what to do next or try would be nice.  So ya know, we'll see. :)

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.

Another Challenge

Trey has been down and out, for about 3 months now. He will continue to be so for a quiet a while.

Through lots of doctors visits, testing, and resting we have learned that it is a neurological issue. Trey's brain is simply not dealing well with all the input the world gives it. He is suffering from
     For the last few months Trey has been stuck in a bed or in a recliner. He's played a lot of games, read books, and watched a lot of TV. He has started to walk with a cane and that has helped a lot. Which mean he isn't falling anymore and walking around the house isn't as tiring. He's still having to take it easy and limit his time out of the house or with certain activities. Right now the big energy suck is energy to go back to school this semester with two graduate classes. It's only been a week but so far so good. Since Trey hasn't been to work in a couple months I'm glad for him to have something to help test his limits without pushing too hard, since the classes are only a couple hours once a week. 
     As far as treatment goes week he starts a specialized physical therapy program for dizziness. Then in February he sees a neurologist. Hopefully by the time we see the neurologist we will have enough information from the therapist and from tracking daily activities that the doctor can help pin point issues. Or move directly in the testing and treatment phase instead of "try this" and "track this" phase.
     Gosh I'm tired....
headaches, fatigue, vertigo and dizziness. Yes vertigo and dizziness are two different symptoms, crazy the things you learn when you are at the doctors.

Breastmilk Power

2012- She would sleep in the strangest places

I am pro-breast milk. Whether it's nursing, pumping, donor milk, whatever. I think breastmilk is awesome stuff. Now this doesn't mean I'm not for formula. I think it has it's place. For people who chose it, or need it to supplement or need it entirely to feed baby. Go right ahead feed your baby. That's what is super important. For us though pumping breastmilk exclusively for Squeaker was probably the best thing I could have done for her young life.

During the first 14 months of Squeaker's life I pumped milk and would feed it to her in bottles. This was very difficult most days but it was worth it. At about 4 months old the doctor wanted us to supplement in formula with the breastmilk. Mix the formula powder right in for the extra calories. The only one that didn't cause serious gastric issues was the amino acid based formula made for cystic fibrosis infants. But even that one was rough for her. It was decided that we would just stick with breastmilk and as long as Squeaker wasn't loosing weight.

I won't say that Squeaker wasn't sick for the those 14 months. She was having nebulizer treatments daily, oral steroids regularly and about once a month we ended up in the ER with a breathing problem. Squeaker had also started seeing her Gastroenterologist by they time she was 7-8 months old. Growth was slow but it was there and very few rounds of antibiotics. As crazy as it all was life was alright and we were getting in the swing of our lives.

Then I stopped pumping. My poor body just couldn't do it anymore, and Squeaker was doing a great

2012- Such a face

job eating food. It was time to just quit. Even knowing how important it was for Squeaker I would still have stopped at 14 months. The timing was right for many reasons it was just shocking to see how much breastmilk effected Squeaker's health.

Like I said while on breastmilk Squeaker wasn't the healthiest kid. But it was mostly related to the LM. Suddenly after she stopped getting breastmilk she got an ear infection. 3 months, and 4 course of antibiotics later Squeaker had ear tubes put in. No joke within 2 weeks of stopping milk she started the infection. And it never went away until she had tubes put in. So around 18 months old Squeaker had tubes put in. A few weeks after that she had two teeth removed that had rotted out due to medicine complications. Well folks it was all down hill from there.

Squeaker was all of a sudden never healthy or gaining weight. We agonized over breathing, sleep, eating and balancing meds. Yeah that was 2012 and it was rough. The longest stretch Squeaker was healthy was 10 days. And maybe two days each during the other months. That's about 32 days. Which means Squeaker spent 92.3% of the year sick. Wholy Cow! Think of that in terms of a day, everyday you would be healthy and functioning for 1.85 hours. How much do you think you would get done in less then 2 hours everyday? If you could control that time when would you use it? Would you get two really great hours of sleep and muddle through the rest of the day? Or would you muddle through poor sleep and then have two hours during the day where you felt great and could accomplish anything? Could you live like that day in and day out for a year? All while not knowing what was wrong.

2013- Getting ready to have teeth out

It was in late 2013 after lots of testing and sleepless nights that we found out Squeaker has an immune deficiency. Want to know what some of the questions I was asked by the immunologist? "Was she breastfeed?" and "Did she start to get sicker after you stopped?" My answers were, yes and yes. Based on those two answers the doctor knew he needed to do some testing. How crazy is that?

I mentioned her weight. Want to see how different her growth rate was? Well here you go.  
Sep-2010 to Dec- 2010 gained 3.61 lbs
-----Breastmilk Only
Jan- 2011 to Dec- 2011 gained 7.5 lbs
-----Breastmilk and Food
Jan- 2012 to Dec- 2012 gained 3.5 lbs
-----Food Only
Jan- 2013 to Dec- 2013 gained 3 lbs
-----Food Only
Jan- 2014 to Dec- 2014 gained 7 lbs
-----Food and IGG replacement therapy

Look at those numbers. Breastmilk and IGG had pretty much the same effect on weight gain for Squeaker. It's almost enough to make me think about re-lactating, (yes that is a real thing). Yeah... maybe not. I did think about it a couple of times but just felt it wasn't right for my body or Squeaker. Low and behold she now hates milk and given her stinky immune system at some point she would still need the IGG therapy. So it would have been a lot of hard work just to end up in the same spot.

It just amazed me as I was going over Squeaker's charts this week. She weighed in at about 34lbs and

2014- See the difference?

almost 41inches tall. Those are both on the chart! 36% and 44% respectively. Then to realize that she hadn't charted growth like this since she was on breastmilk, made me feel pretty good. Especially considering a lot of the self doubt I went through while pumping because Squeaker did have a hard time putting on weight.

Just wow....

Starting To Choose

    Surprise, surprise Squeaker is sick again. Nothing major just a cold but it is enough to make her miserable and start another antibiotic. Of course Squeaker has been having some massive headaches with all the sinus pressure. The last week or so I've been offering extra pain killers to Squeaker at nap and bedtime. She has been accepting them and yes they have been helping. Then Friday night around 11:30 Squeaker woke with a terrible headache. When I offered some extra pain killer she said "no."
     Honestly I was pretty surprised. I couldn't figure out why my 4 year old, or any 4 year old, would turn down a chance to feel better. It was just so dumb founding. I thought about giving the medicine to her anyway but I stopped myself. Trey and I have been working really hard and letting Squeaker make choices for herself and letting her have some control. Especially about medicine. There is so much she HAS to take everyday and every week. For the night I decided not to press the issue. Yes Squeaker was miserable, fussy and a little loud. I felt she had a right to choose not to take the medicine. She even refused essential oils, back rubs, and a head massage. Pretty much anything I offered Squeaker would turn down. It was hard and sad that she was turning away from all the help I could give but I knew I had to let her chose.
     Now I'm sure you could say, "She's 4 she doesn't get a choice." or "If she is being loud and disruptive then you need to make that stop." And as valid as those ideas are and I have taken those stances before it just didn't feel right for Friday night. Now I will say I had picked a time in my head (12:15am) that if Squeaker hadn't settled into being quiet and calm that I was going to "drug" her. Because sleep is precious around here and I had no desire to be up all night. Pleasantly in the end I didn't have to give Squeaker any medicine.
     Since Squeaker had denied having "tickles", which is what we call essential oils, but I felt she really needed something I went and pulled out the humidifier. Now the humidifier is a scary thing for me. Squeaker does not do well in heat or humidity. The humidity really messes with her breathing. Which yes makes summers in Alabama very interesting.  In the past the humidifier has caused some serious and scary breathing issues. So yes I fear the humidifier. I needed a way to deliever the oils, and the humidifier was all I had. I carefully filled it with water and oil and plugged it in. Turned it on low, said a prayer and hoped for the best. In a couple of minutes our little corner smelled of mint and lavender. I started to feel confident this would help. Sure enough after about 5 minutes Squeaker settled down a little and stole my popcorn snack.
      After snacking for a little while Squeaker asked for her juice and just after midnight she was off to dreamland. Where she stayed for about 3 hours. Not to shabby if you ask me.
     Do I know what the root problem was? Nope. Do I know exactly what helped? Nope. I do know that Squeaker is learning about her body and how to handle it. There will be plenty of times to come where she will have to endure pain, suffering, and hardship. Is it sad she is starting so young? Yes it is. That is something I can't change though. I can only teach her that sometimes you take the medicine, sometimes you just deal, and sometimes you take the risk and turn on the humidifier.

Naps...

If the craziness of this month has taught me only one thing it is the importance of naps. Squeaker is still on medically mandated naps which is pretty cool as a parent. Each day I get a break or sometimes a nap. It's pretty cool. But there are days where life just doesn't permit the time for a nap. I have always tried to keep it too a minimum.

This last month has been a whole land of crazy. With a random weekend trip to Florida, having family come in, doctors appointments, and then just life on top of it there have been more days without nap than I would like. Boy was it nuts, but I learned. I learned that if Squeaker misses more than 3 naps in a 7 day period she will be miserable and tired for about a week. If she misses 2 in a row it takes a week to recover.

Pretty much I have a 1 day lee-way. If we miss one nap it's okay. If we try to push her it never works out for us.

So for now I am guaranteed a break each day, the positives to all the crazy I deal with. :)

Even The 4 Year Old

Even the 4 year old can tell that infusion is working. The last two month or so Squeaker's infusion hasn't be lasting all week. She has it Monday night and then by Friday she is starting to act sick. Saturday, Sunday and Monday just all stink in many ways. Lots of temper-tantrums, meltdowns, and lack of sleep. Its just a loooooong few days. Then Tuesday morning Squeaker wakes up cheery, happy and she is less likely to melt down. With the flick of a swtich life is good again, then over the week the light burns out.

Last week was just awful. With Squeaker fighting a cold, an unexpected trip to Florida over the weekend. Oh goodness it's just been so hard. Then last night was Infusion. Or course Squeaker pitched a bit of a fit. But it was said and done soon enough. This morning was Magic Tuesday again. Yes Squeaker is still a little sick, she just can't shake this cold. But there have been few melt downs but nothing major. Then around 1pm Squeaker and I had this conversation.
Squeaker: "Fusion today?"
Me: "No. 6 more days."
Squeaker: (Agitated) "But fusion today."
Me: "Not today sweetie."
Squeaker: (Stamping her feet) "Fusion"
Me: "Why do you want fusion."
Squeaker: "Fusion feel better. I feel better."
Me: "Does fusion make you feel better so you want more fusion so you can feel even better."
Squeaker: "Yeah. More better."

Not only was it just awesome for her to put her thoughts into words. But she gets it! I know she hates having needles stuck in her belly every week. Honestly who would. But that she understood what "fusion" does for her is just amazing. She really is a smart little kiddo.