It's been a roller coaster...

Abby was doing great up until the 2nd of Oct. Started w/ a fever and lung coarseness so we thought it was another cold or respiratory issue so talked w/ pulmonary and we started tobramycin nebs and tami-flu.. Fever went away but lung coarseness remained on Wednesday, so after making some calls w/ pulmonary, we went to the New Berlin Clinic for a Chest X-ray because I dont want to expose Abby to all the junk in the hospital. Chest X-ray was stable to improved from the previous x-ray so that ruled out pneumonia or anything else. She was coarse for the rest of the week...Thursday for her bath, she totally acted like she was freezing.. which was unusual.. Saturday came and she wasnt looking so hot.. Called pulmonary again and they really didnt have much to suggest.. they recommended that if she didnt have a temp do not bring her in due to exposing her to different stuff. I was just watching her having trouble breathing... and thought to myself, her torso is loose now and before it was rigid.. how can I replicate her torso rigidity? I got her compression suit out and put it on her as tight as I could.. She started coughing up mucus left and right and improved.. The question is then.. which med do I wean? I weaned the baclofen by 5mg so she went from 15mg TID to 10mg TID... She slept better that night w/ the vest on.. Sunday morning, I noticed she wasnt peeing that much.. ok all the mucus etc, she could be a little dry even though she didnt look like it so I ran pedialyte for the day.. usually when Abby gets pedialyte she tinkles like crazy.. there was still little to no pee later that night but she started looking a little puffy to me and the lung coarseness started back up..So I weaned the Valproic Acid to 1.5cc... Monday, her diaper wasnt that wet in the morning and she was looking bad again..Nurse Sharon was here to monitor her etc.. I called Dr. Hansens office to get her in there.. We got to Dr. Hansens office in the afternoon, Abby's lips looked a little pale, lungs sound horrible and still very little pee for what was going on.. Her oxygen sats at Dr. Hansens office was 88 which is not that good for Abby.. So Dr. Hansen suggested we go to Waukesha Memorial to get Abby on Oxygen and monitors and then from there be transported to Childrens.. Once again, everything checked out.. labs looked great, chest x-ray is stable to improved but she's not peeing, Oxygen sats were normal when we got to waukesha.. still a little puffy and sounds horrible.. We got to Childrens around 630 that evening.. I asked for a bladder scan, that showed minimal pee in the bladder so she wasnt retaining it that way... it was just a wait and watch pattern cause everything is checking out but she's doing what she's doing.. After midnight, she started peeing.. by morning her lungs started sounding better.. and by noon, she had a very productive cough w/o the need for the compression suit.. her pelvis was a little more rigid then it was before but managable and still a heck of alot better then what it was proir to valproic acid.. We were able to go home on Tuesday and she continued to improve.. We took her to see Dr. Bousonis, our new neurologist, after she was discharged to start cleaning up the meds that Abby has been on but not effective.. so we can figure out if the valproic acid is interacting w/ another med cause the skeletal muscles to relax or is Abby metabolizing it differently.. I love Dr. Bousonis.. Hard to understand but very thorough!!! So we started weaning the clonidine for this week.. wait a week.. and then wean the clonazepam down to .5 tid.. then we'll go from there..

Abby has always done unique stuff w/ drugs.. Dr. G realized this time that Abby can get puffy and her electrolytes stay normal.. I've always asked that.. I guess it's a good thing but then it's hard to diagnosis if she's doing something weird.. plus over 2 weeks ago, I was told that the valproic acid wouldnt make her loose.. we went from rigid and hot to loose and cold.. Whatever was making her axial (torso) muscle rigid is now relaxing.. I dont think any of us realized how contracted her torso was prior to this.. It's a great feeling to watch her sit-up w/ minimal support and roll a ball to her dad.. it's not normal movements by any means, they are delayed etc but she's doing it.. she could barely move her hips over 2 weeks ago.. now she's starting to use her legs separately to roll from back to side... She's holding her arms/hands above her head.. she's following objects like crazy.. Starting to reach out more.. she's tolerating her gait trainer and stander again, but also since we can get her legs straight, I noticed that one leg is shorter than the other.. after talking w/ therapy today they suggested for her not to do any constant weight bearing until we get a hip x-ray.. Her spine and ribs are different too.. Abby has always been a "board" in the back.. now she can literally fire her muscles like they should be and sit up straight for a couple of seconds.. this is going to take some time because she's building her "relaxed" muscles for the first time and weighing 37 pounds.. plus we have to watch out for her spine now.. since the muscles are not rigid and keeping it straight, she could develop scoliosis or kyphosis if we dont get her stronger.. Soooo she's doing alot of tummy time right now and tolerating it w/ no problem for extended periods of time.. So I like what it's doing for her skeletal muscles.. but I dont like what was going on w/ her fluids.. Was she third spacing (swelling up) and causing secretions in the lungs and after weaning the med, it help normalize it??? Was her secretions thicker in her lungs and with her muscle looseness she couldnt productively cough it up.. but that still doesnt explain her lack of pee if it was just thicker secretions.. Whatever it was, she's alot better now, a little more rigid but manageable!

Speech, she's doing great! She's calm.. She's following direction alot better.. More focused.. She's even using her communication device w/ her hands now instead of the cheek switch.. I can go on and on.. She told the nurses at Waukesha the other day, "all done".. The nurse at childrens asked her if she wanted to her to leave her alone.. and Abby shook her head yes.. She told me "dont" the other day when I was rolling her back and forth. :) I'm proud of her!

Over the next couple of months, hopefully we can wean some of the meds off of Abby.. We are seeing GI and Neuro again in 2 weeks.. Next month we see Endocrine in Madison.. At some point, I would like to get genetics involved to see what Abby does w/ her fluids, muscle rigidity and drugs.. I really want to get her hearing and eyes tested again since she's doing all these wonderful things now to see where she's at and maybe tolerate having glasses on etc..

Over the weekend, we are working on a letter to Santa.. We're using pictures of toys Abby has choosen that she wants to put in the letter..

Thanks for checking in.. Love Miranda Abby and Chris..

Abby is doing great!!

Abby is doing soo good! Muscles are nice and loose. She's weak because of her muscles being so contracted prior to the valproic acid but now we can actually work'em and hopefully make progress. Labs looking great! Liver is looking good and PLATELETS ARE NORMAL!!!! Let me type that again... PLATELETS ARE NORMAL!!!! :) Havent had to use the catheter at all in her ostomy stoma..

Last week she was a little on the spacy side from the valproic acid but now she's getting back to normal. She fatigues easier though. I pushed her a little bit this weekend.. we got out all the equipment that we kinda had to stop / minimally use due to her increasing rigidity... she's like butter in it now, No resistance and tolerating it just perfectly... We are acutally going to skip the botox in the legs to see what happens because her hips/hamstrings are sooo much better! She can actually stand up straight again..

She's doing sooo good in therapy. Speech, she's saying more words here and there.. She even did the itsy bitsy spider on her own w/ Tammy supporting her arms.. It was sooo cute! Everyone cant get over how well she's doing and how loose she is..

Thursday, we went to a Fall Fest.. She was Dorothy. There's no place like home! :) I'll post pics up really soon..

I think that's all for now!! She's doing awesome.. Im sooo proud of her for doing everything she's doing and proud of myself for not stepping down and standing my ground for what I know I saw.. it just sucks that we didnt know about this earlier..

Got home yesterday..

Sorry for not updating.. just been trying to calm down.. Abby is doing good! We got home yesterday from the hospital.. We hit another road block last week w/ her gut.. She was improving from the pneumonia and I noticed that something was wrong.. seemed like her fluids shifted (not pooping, alot of pee), she was aggitated w/ a small amount of fluid in her gut etc.. To make a long story short.. they were saying Ileus (part of the intestine doesnt function normally) due to her having pneumonia and it just didnt add up to me based on what certain test showed etc... I was extremely upset that no one listened, my child went w/o nutrition for 4-5 days and it couldve been easily resolved by doing a upper gi barium follow through study on the first day to say it's either an ileus, obstruction or whatever and we couldve been treated and out of there.. If you know me.. I'm sure you have heard about it! :) Sunday night, they just put a catheter into Abby's ostomy stoma and she tolerated feeds again and was pooping.. Her muscle rigidity was so bad that her abdominal muscles were occluding her stoma so she couldnt poop. I knew then we had to get her muscles under control some way shape or form or she would have to have surgery to fix it..

They agreed to start the valproic acid even though they disagreed w/ it by telling mme what I thought I saw in Aug/Sept wasnt the case etc.. Nothing but great things have happened since starting the vpa in this short amount of time.. The catheter is out of her ostomy and she's pooping, her therapist couldnt get over how she responded to therapy today already, her poor little hips are not popping anymore etc she's definitely a little more spacy at times and taking naps.. Lets just hope that it doesnt hit her liver so hard.. We will do labs this week to keep an eye on it..

She's still surprising us w/ saying things.. We were cuddling and watching do you think you can dance.. I hear.. What's that? I just looked at her.. and told her that's a person that cant dance but think they can.. :) Today, Chris gave her some soup.. she licked her lips and said What's that?.. and I told her good job tonight, she said thank you.. it's unbelievable.. she'll babble 95% of the time but out of nowhere comes these statements at appropriate times.. she was even talking back and being sassy tonight.. That's my girl! :)

Tomorrow is a busy day, Her vibration vest is being delievered now and training, she has speech and aquatics start up tomorrow..

I think that's all for now! Thanks for checking in! Love Miranda

In the hospital :(

Abby started w/ cold-like symptoms last week.. she was getting better but then the symptoms came back w/ vengence.. Took her to the ER yesterday and she was admitted w/ Pneumonia...

She's looking alot better today! Still on oxygen, antibiotics and doing extra nebs.. They just tried a vibration vest to see if that will help her break up some of the congestion and she loved it! She was laughing! The H1n1 culture came back negative which is good.. but she had something last week that must have been viral because we thought she had pink eye last Tuesday and on Thursday is when she got really sick and her liver enzymes were totally elevated.. sooo she could have had it last week.. got over it.. but the pneumonia got her..

Last Thursday, Abby had a busy day on top of starting w/ congestion etc later in the day... We saw Dr. hansen for the urinary tract infection follow up.. the urine was clean this time soo the cipro took care of the infection.. Then off to see Abby's new neurologist, Dr. bousonis. She fell asleep for the eeg and he was pretty impressed w/ what Abby was doing.. No seizures were noted just those spikes.. The interesting thing is that everytime I would say, "Im gonna take your temperature" she would tense up like startle and have this look of anxiety.. he even had me say it when she was sleeping and she still tensed up and kept sleeping.. He even sat his coffee mug down and she jumped in her sleep at that.. So we talked about different medications for neuromuscular issues and I told him I wanted to try the valproic acid again to see if we have the same neuromuscular affects because Abby's muscles/bones needs a break.. or see if it was a fluke or a combination of everything she was on at the time.. so he agreed. I told him I would ask to put my child on a medication that I know that could damage her liver unless I saw some dramatic affects during the period she was on it.. We just have to be careful w/ her being on the clonazepam now too and starting the VPA.. After we were done w/ his office, we went to childrens to get labs drawn and thats when we found out that her liver enzymes looked horrible.. so we held off on the valproic acid for now since that can hit the liver too and getting her off of the dilantin because her level was less than 3 which is way below therapeutic but she is still getting it so is she not absorbing it? .. We started weaning dilantin Friday night.. and Monday night I weaned it again.. Now her heartrate is back down in the low range like it was before we started the meds. I swear this kid does everything opposite! Her liver enzymes are back down so hopefully whatever was hitting her is gone now!

I guess right now we are just working on getting her respiratory status back to baseline and then work on the muscles etc then.. I think she has been in the hospital more these last 3 months than the last 2 years total!

She is still improving in the speech area.. Right at bedtime the other night, she said clear as day, I"m tired.. I asked her did she want to go to bed.. she said Yeah.. so I put her in the bed and she was out! We're catching little things here and there w/ what she is saying..

Earlier today, I noticed she got really quite... I went to check to see what she was doing.. she had her IV in a death grip pulling at it.. I asked her to let go.. she said NO.. so that took some time but luckily the IV was saved.. she still tries to grab it though so we're using duckie and other objects to block her but she just pushes them away and continues to go for it! Sassy!

I will up date tomorrow! I'm hoping to be outta here by the weekend but thats all up to Abby! :)

Thanks for checking in! Love Miranda

I UV EWH!

Our lesson today was pumpkins and jack-o-laterns..
I like this stuff!
Pumpkin Painting is Fun!
Abby is doing great since the surgery from a respiratory standpoint. For the exception of the scar were the chest tube was, the other 3 looks like mosquito bites! Pretty hard to believe she had lung surgery through those lil incisions!

The only major issue we have is her muscle rigidity. It's horrible! I feel like sometimes, if she would move the wrong way or gets tighter, that her hips could possibly dislocate or fracture.. that's how concerned I am w/ this! It's her whole body though.. We switched her diazepam to clonazepam and already increased the dose of clonazepam. That group of drugs, benzodiazepines, has helped tremendously with her aggitation and frustration. Cognitively, she's actually doing more! But it's hard for her to move or try to do stuff because she's so tight. I called Dr. Moberg's office on Friday and she wanted to increase her artane to 4mg three times a day... I really dont think that's helping her since we surpassed the 1.5mg dose but it's worth a try to hold us over til later this week to see Dr. Bousonis, New Neurologist, and Dr. Hansen, her new pediatrician. :) I'm really going to push at neurology to have a trial back on the valproic acid. I just dont like that because what it can do for her liver but if we can see the improvement of muscle tone we saw in september that would help her alot and we would just keep a close eye on her liver enzymes. I've been doing more and more research on her symptoms etc.. Im getting myself so worked up from anger that I feel like no one is listening for the exception of a few dr's but I need the ones who are not listening to listen! So maybe this will help.. The following link is something I came across while researching and sounds pretty damn familiar w/ our situation, refer to the section-Hyperekplexia (Startle Disease)-

The symptoms even prior to the brain injury, the medications that helps it and the continuous seizure vs spike in the EEG readings are consistent with what we are seeing/have heard. I want to rule this out!

On to the cute stuff, She's doing new stuff everyday.... Friday, we were cuddling.. I asked her to say I, She said I.. I asked her to say Love, She said UV, I asked her to say You, She said EWH... and a big ole smile... so of course, I got Chris on the phone and she just looked at the phone, smiled and didnt say a syllable... After that I got my recorder out.. and finally got her to say IIII Lov.. but no You. .:)

When she's done with something, her new saying is 'ALL DONE" and if we dont respond.. we hear it again and again.. until she just gets mad.. This is going to be a trouble area I can see already w/ her.. Initially when she first said it, we listened and stopped to support and further her communication skills.. well now, she thinks that as soon as she says, All Done, She's finished...yeah.. I dont think soo! :) And then if she's in "that" mood.. we get a NO or NAH!

We also have to stop counting to 3.. Abby gets all excited w/ anticipation when we start counting to 3 because she knows that something is getting ready to happen, for example, 1,2,3 I'm gonna get you! She just starts laughing. Well now, she doesnt think that numbers exist past 3.. I noticed it after we came home from surgery, you ask her to do something 5 times, she will do it 3 times, stop and then gets frustrated.. I guess last weekend from what I heard, she told Nurse Mary, "No More" after she did her 3 head lifts.. So it's funny now, when we start counting, we're going to 5 now.. so when we hit 3, that look of anticipation that she has, turns into a "What the hell.." look..

It's soo nice w/ the diazepam which is now clonazepam on board. I can actually get stuff done around the house w/o her screaming her head off for constant attention, she sleeps through the night (still No naps, which everyone finds interesting because she should be knocked out from the drugs) She's tolerating therapy even though she's extremely tight etc... It seems like she's able to focus more now if we can only get those muscles to work right!

She's really loving oral motor stimuli! I think the picture says it all.. :) First time for her to keep a pacifier in her mouth w/o gagging.. she was chewing more than sucking but it's a start, it keeps her occupied and it helps to improve her swallowing capabilities.. She drank water from a sippy cup tonight.. not much but before, Abby would gag during the process at some point.. she didnt once..

I'll leave with some of her activities from today.. It was texture day, today! She loved playing in the pumpkin pulp and paint.. Tomorrow is decorating halloween cookies!

I thought she was getting sick on Thursday but just 2 days w/ extra nebs and tylenol and she seems back to normal now.. I had the same thing earlier in the week.. I was very achy, right sinus felt stuffy and chest felt kinda congested and for the except of some achiness, Im back to baseline.. Its weird, didnt feel horribly sick but enough to make ya feel blah and yucky!

I think that's enough for now! Thanks for checking in! I will update later this week to let cha know about the appts! Love Miranda Abby and Chris!

We got home yesterday!!

Abby is doing great! Everything back to norm!! Everyone is so impressed with her and how well she tolerated the whole thing!! Its gonna be pretty busy around here over the next month.. Between making dr appt and weaning/switching meds, the schedule will be pretty full!

Thanks for all the support love and prayers! Love miranda

Abby is doing awesome!

Abby has had a wonderful day! She's back on room air and the high flow nasal cannula has been weaned down to 5Liters. The weaning hasnt changed a thing, o2 sats are still great etc. I'm hoping tomorrow is the day !

The only new thing this morning is that Abby has a urinary tract infection.. probably from the catheter.. so she's on antibiotics.

Today, I'm taking her to a lil drum music session here at the hospital. Hopefully she will like that..

I think that's all for now! Cross your fingers for tomorrow.. I'm gonna have to convince Dr. G! :)

Thanks for all the support and love! Love Miranda