Sick, snow, pulomonogly and the immunology saga

A large fear of mine with raising Jillian, is what happens when I am sick? There are a lot of things that I juggle that other people don't know (Brent always says that I just do things that need to be done and call people that need to be called and he would have no idea where to start, not that I don't think he could figure it out), or don't know how to do, ect. Luckily up until lately I have stayed healthy and have not had to deal with it, now within the last 3 months I have ended up sick 4 times. Now, two of those times were bad allergic reactions and other then the ER visit and a day or two of rest, I was able to bounce back quickly.
Last week Jillian developed an ear infection that is thankfully doing better. On Thursday I really started feeling crummy (I had not felt great all week but I had a sick kid so that came first). By Friday my ears hurt so bad I could barely hear and my throat was killing me. I went to the walk-in clinic (SO rare for me to actually agree to a walk-in for me) thinking I had an ear infection and hoping I did not have strep. The doctor felt my throat and you could tell she was surprised by how swollen it was. I did not really have stuffy nose and did not have a cough so I had not really thought too much about my sinuses. She checked everything out and said she was going to treat it like a sinus infection however it was not like I had green mucus or any of that, it was that my entire sinus system was swelling. They put me on an antibiotic and steroids (3rd time in 3 months....) I figured I would take it and within 24 hours I would be better.... I am so grateful for my mom that night. She came and did dishes for me since those had just been piling up with two people sick in the house. Saturday morning I woke up sicker then Friday and I was rather miserable all day. Sunday I woke up and looked like I had been beaten up. My whole head was swollen and I felt like crap. Thankfully as Sunday went on I started to feel a little better.
Sunday night we hosted Thanksgiving for Brent's family at our house. We had a nice time and Jillian enjoyed seeing everyone. We watch the Charlie Brown Thanksgiving movie. Jillian was very interested in certain parts of it and then would go back to playing. She is so funny.
Monday morning I woke up with almost no voice and feeling like I had been run over. Thankfully my 4K kiddos took pity on me! Jillian's speech teacher called and said she was not feeling well and gave us the option to cancel. As much as I love her speech teacher I did not want to willingly expose her to someone who was sick. We went to PT. By the time we were done in PT it had already snowed several inches in Elkhorn and we still needed to go to Children's for an appointment. Brent said that if we came and got him in Waterford that he would drive up with us. The drive to Waterford was long and we almost got into a nasty accident but thankfully we were all able to avoid hitting each other despite the oncoming car spinning twice. Thankfully we all drove away fine. We got to Waterford and picked Brent up. We decided to take hwy 36 up because I had heard that 43 was bad. I was driving along and my phone rang so Brent answered... it was immunology who I have been waiting to hear from for a long time now. As Brent started talking to them, a large pick-up truck going the other direction hit ice, flew through the median and landed VERY close to my car. I will fully admit that the words that came flying out of my mouth at that moment were not the best words I could have said and of course the dr probably heard them.... great! Brent then was not listening to the doctor and just said ahuh to what she said and then hung up forgetting that I really needed to talk to her about all of this. A little while later we switched drivers an I called and left immunology a message to call me back so we could talk about the results.
We got up to Milwaukee safely. We went to Jillian's appointment. They weighed her with clothes and a wet diaper. She was such a big girl for vitals. She hates pulse ox and blood pressure however she handed them her finger and let it glow and only whimpered when the cuff hugged her arm. The tech was so proud of her that she wanted to give her a toy but settled for stickers because she did not have any toys :)
We went into the room and Brent started to change Jillian's diaper. With that the doctor came in. I love how straight forward her pulmonologist is with her. Each time we are there we have to fill out a questionnaire about how Jillian's lungs have been since we were there last. This is normally hard for me to fill out because Jillian typically has one bad week out of a month and the way the questionnaire is set up it is hard to accurately document that. However sadly this time it was easy to fill out the form.... Jillian bombed it with how much her lungs have sucked lately.
The doctor talked with us about Jillian's meds and the choice was made to up her to the highest dose of advair. I know we need to help and protect her lungs more then we are right now but it is so hard putting her on such high doses of such strong meds. We also added flonase to the mix when she has a runny nose to try to control secretions. She said her bronch came back the same as the last one. We talked about the vaccines. She did not like how much they kicked her butt and asked if immunology was starting ICG and I said no because her blood work came back fine. She express how Jillian is always sick with stuff... I agreed that even though her blood work came back normal that does not mean that she presents normally.
We go back to see them in 3 months. We will see how her lungs do between now and then. We talked a bit how sometimes with Jillian it is hard to tell what is the chicken and what is the egg when it comes to Jillian's health problems so we have to just treat stuff as we see it.
We then stopped at Mayfair quick. Jaime and Jason were going to join us in Milwaukee for dinner however shortly after getting to the mall they decided it was not safe for them to drive there so headed out too. Traffic was BAD between Mayfair and the zoo. There were multiple stalled vehicles stalled in the middle of the road.  It was a mess. The farther south we got the worse the conditions of the road were. They were not well plowed and people were driving stupid. It took over 2 hours to get home. It was a LONG drive!

So of course immunology called back while I was making pies with 4K kids this morning so then I called back when I was done teaching. The nurse called back this afternoon and said she did not understand my message and I told her I wanted to talk to the doctor about the results. The nurse then called me back a few minutes later to tell me that the doctor had talked to Brent yesterday. I told her I knew that and that I wanted to talk to the doctor about what she told Brent.
A little while later the doctor called me. She told me that Jillian's labs came back that she gained the appropriate immunity to the shot that she received so she should be able to get shots.I explained to her how that shot made Jillian sick for 3 weeks... really sick. She said that no one in their department had ever had come across a reaction like Jillian and they think it is just that she is getting a cold around the same time she gets a shot and that is why she gets that reaction. I asked her why it is the same reaction every time then. How can it be that she happens to get the same virus each time she gets a shot if that is the theory you are going with. She said there is no way that a shot could make her sick for 3 weeks. She said that we need to get her asthma under better control. (this is one time when you can tell what the chicken and the egg is, you give a shot, her lungs suck) They said they don't see any reason why she can't get a shot. (AHHHHHHHH) We went around a few more times. She told us that they don't need to see Jillian back and that they want us to take her to her ped to have her get the shots that she needs. (AHHHHH)
I then asked about allergy testing because they told us they were going to run the blood test for that when we were in the office and she told me they did not and that if we would still like that run we needed to make an appointment with someone else in their office to do that.
I was SO mad when I got off the phone. I get Jillian does not react "typically" however this did not solve the problem, or point us in the right direction. It did not make a plan. Honestly our plan before of just not doing shots because they made her sick and we did not know why was better then this. I feel like we went though 3 miserable weeks for nothing. Yes we know her body builds up antibodies when she gets a vaccine however it should not be at that cost. The question was not if she built up the immunity, the question was why did she get so sick from them and they did not answer this question. We also did not figure out why she gets sick with all sorts of illnesses all of the time. On top of that we did not figure out if allergies are contributing to all of this.
Instead they want me to keep giving my kid a shot! A shot that makes her sick! It is not that we are not trying to vaccinate our kid, it is that it makes her really sick. We work so hard on a normal day to keep her healthy to keep giving her something that makes her sick seams illogical to me. I know they are not trying to harm her but her getting sick like that sets her back in every area (PT, OT speech, lung, GI, ect.)
On top of it they did not solve anything. I know I should be past expecting easy answers with Jillian however I have not. I keep hoping to an arrow. I keep hoping these pieces will fall together. I should not get so let down when we get done with testing and know no more then when we started, however I have to keep hope so I have to hope that one of these tests will point to something.
I feel like because the blood test came back normal that they gave up on her. They have dismissed her. They are not looking any farther at this point. We are left to figure out this shot problem. I feel like when blood work does not point to something obvious that people give up on fighting for her. I wont give up on her. I will keep fighting but when doctors leave the fight it is exhausting.

I sent a message to Jillian's ped today about all of it and asked her opinion. Immunology is wanting her to give the shots. The ped nurse called me back. She said the ped was gone until after Thanksgiving and that she would send her the message. She said that as her parents we have the option to opt out of giving shots. She said that she has watched Jillian with shots over and over and that she thinks that this is crazy. She that once the ped gets back that we will all talk about it and come up with a plan. She said that our ped will not drop us for not vaccinating (some will) but that we will work together and figure out what is best for Jillian. She told me not to worry and that it will be ok. I am so grateful that we have such a great nurse. They could have just waited to call me until the doctor was in however she wanted to make sure I was ok before the long weekend. I know her ped will work to do the best thing for Jillian. I know she will not agree with just giving her another shot. I am thankful that she is there to work with us.

I know this all happens for a reason. I know that we will all look back at this someday and see how it was a part of the puzzle. For now we live in the trenches and keep working for the best things for her. We love our little girl so much and just want the best for her. One day at a time. One prayer at a time.

But for today... I am going to give myself the permission to be frustrated (I often try to hide that so I can just keep going), and be ok with the emotions I am feeling, however use those emotions to remember to turn to Him. Use it to remind myself why we do this all... for one amazing little girl who lights up the world. And I will channel some of this energy to make some Tubie Friends for other kids like Jillian so they can have a stuffed animal to hug and love when times get hard for them too.

Jillian in her turkey dress (yes the same dress from last year). I love the bow in her hair. She normally hates bows and will not leave them in but she wore that bow multiple times on Sunday.

She was really worried about all the snow in the backyard. Her words were "oh no!"

Ear puss

Oh Jilli-bean!

So our week started Sunday morning with Jillian waking up having a hard time breathing. See Saturday night she decided that swallowing some bath water was her best plan... it backfired on her Sunday when she was super lethargic and struggling to breath. I stayed home with her while mom and Brent went to Church.
Monday morning she was doing better. We did a few nebs during the day. Working hard in PT and talking in speech made her start to cough more, but overall she had a much better day then Sunday.
Tuesday we still did a few nebs during the day but her day was ok. She a was a little off in speech but still did fine.
Wednesday I had to work all day because there was parent/teacher conferences. Brent came to the daycare after work to work on a computer. He and Jillian hung out until I was done working and then we went over to Pizza Ranch for dinner. Jillian was a little crabby but she was out of her routine. I looked at her ear during dinner and it looked like she had dried blood in her ear. I figured I would look at it better at home.
The drive from Pizza Ranch to our house (about a half hour) was a VERY long drive home. She varied between, screaming, coughing and choking. We got home and she was still really crabby. I looked at her ear and it looked like a large chunk of ear wax. Brent got a warm wet washcloth and we got the big chunk to come off. Behind the big chunk all you could see was white puss. You could not even see into the ear at all. We still had drops from when she got her ear tubes put in but they were not going to work because 1. you could not even get the drops in her ears because of all of the wax and puss 2. the container of ear drops formed a hard crust on the top of it and you could not get any drops out.
She was in so much pain when I put her to bed that I ended up giving her some Tylenol so she could get some relief from the pain so she could sleep. That is super rare. This is the same child who pops teethe and we dont really notice because she just deals with the pain.
This morning her ears still looked really yucky. I was able to get her an afternoon dr appointment.
We went in. Her temp was normal. Her one ear had so much build up again on the outside that they could not look at it. The other one they looked at and it was full of puss and junk. They cleaned up the outside of the one ear so they could look at it and it was full of puss too. They were not able to see either of the ear drums because the ears were so infected. They said that giving her ear drops was not doing to work because you could not get them in her ear. It was decided that the best choice would be to give her antibiotics in her tube to help her.
So here is to hoping the meds help her and her ears clear up. Ear issues just add to some of the things that she struggles with (balance, speech, ect.) but during this all she has been such a trooper!

Pictures of this week:

She gave George a neb too

Taking a neb with George

Falling asleep while taking a neb

Up the speech

We have made the decision to do something that we have been talking about for a while. We are upping Jillian's speech from once a week to twice a week. She will now have two 45min sessions a week.

This move has been talked about several times and we decided that this was a good time. Jillian has now hit 8 of the 10 top indicators for Appraxia of Speech. This makes a lot of sense with Jillian's symptums. Here are some indicators of appraxia:

• have no direct impairment of speech muscles although children with DS typically have low muscle tone.

• often have difficulty with movements needed for feeding, eating, and swallowing.

• have difficulty with voluntary movements for imitating sounds or speech.
• Receptive-expressive language gap
• More frequent loss of previously produced words
• Groping for sounds
• Presence of oral motor incoordination
• “Inappropriate prosody, especially in the realization of lexical or phrasal stress”
  
  Children with CAS make a number of prosodic errors including (a) applying stress to the wrong syllable of a word (e.g., “pony” instead of “pony”)
• “Lengthened and disrupted coarticulatory transitions between sounds and syllables”
  
  
  Children with CAS may demonstrate prolonged pauses between phonemes,syllables, and words resulting from challenges making smooth articulatory transitions from phoneme-to-phoneme or syllable-to-syllable. The pauses and breaks between phonemes may give the child’s speech a staccato quality. When coarticulatory transitions are disrupted, the child also may exhibit articulatory productions that negatively impact speech intelligibility (e.g., frequent phoneme and syllable omissions, vowel errors, voicing errors, resonance differences, and difficulties producing increasingly complex phoneme sequences).
• “Inconsistent errors on consonants and vowels in repeated productions of syllables or words”
  
  This feature refers to token-to-token variability, or variations in the way a specific word is produced. For example, within the same session, a child may produce banana as “babana,” “bana,” and “nana.”   
  
  
  
  
  

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  So What does this all mean for Jillian? 
  
  
  • Jillian understands a lot more then she can say. 
  • She have very limited spontaneous speech. Most of what Jillian says is something she is imitating. If you ask Jillian if she would like a doll she will try to say doll however she very rarely asks for something by labeling it. That includes people too. She vary rarely calls me mommy unless someone else has said mommy recently. This also creates the illusion that Jillian has a lot more words in her vocabulary then she really does. She will try to repeat almost anything you say however that does not mean that she can say them without you saying them first. Most words that Jillian can say consistently independently are words that are on her speech cards that we practice a lot.
  • Just because Jillian can say something once does not mean she can say it again the same way. You can ask her multiple times in the same night to say a word and it frequently will come out different every time. 
  • Jillian learns words and then seams to unlearn words. This was one of my biggest cues that something was going on. Jillian would learn a word and then we would not hear it again for months. She will say a word somewhat consistently independently and then it will disappear. Like the word "yea." She was saying it for a while when she wanted something. Now I have not heard it again in a while. We have to reteach her the word like she never knew it. 
  • Jillian will take long pauses in the middle of words that she does know. Sometimes there are several second pauses in the middle of a word. During that time she will frequently move her mouth like she is trying to say something however nothing is coming out. It is like she is trying to say something but nothing comes out.
  • Jillian's communication patterns are not consistent during a day. She will have short periods of time where she will babble a lot and we will have some words pop through, however she will also go hours at a time without talking at all, even imitating. 
  • She substitutes odd things. Many kids substitute words, like all furry animals will be a dog. Jillian's substitutions are not like that. Most commonly they will be any word that starts with a "b" sound will be baby or bubble. Words that start with "d" and "p" will sometimes be baby or bubble also. 
  •  Jillian is a month away from 2 and normal is: "By the time your child hits his second birthday he should have between 100-200+ words and should be starting to combine 2 words." Jillian has significantly less then 50 words that she can use independently. We are currently working on putting together a list of independent words however it is hard since she tries so hard to imitate whatever we say. The only two word combination Jillian has is "thank you" however to her that is really one word. They are always said together, and most of the time while signing. 
  • She struggles sometimes with words that she can say independently. Tonight she was trying to say "hi" to Brent and all she could say was "bay." 
  • Despite all of this she is still happy. She still tries to communicate. She uses sign language for somethings. This week we started to introduce PECCS pictures to her to try to help in her communication. To help her even more we are adding an additional day of speech.   
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