Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 57
December 10   Claire had a good morning, she was up and had breakfast early, then she went back to her crib while mom took a shower. Once mom was ready for work and they were both packed up for the day, out the door they went. On the way to work, Claire started to gag, mom pulled over and put a cup under Claire's chin, and the Peanut threw up... she seemed to be making funny noises, mom recognized the noises as Claire trying to have a BM. Somewhere along the way mom was thinking she aspirated just a tiny bit, enough to make her gag, but then, it could be phlem too. No telling, but once she threw up into the cup, she was fine and off they went back on track to daycare then mom to work. Mom told Claire's teachers... evidently she's been doing this... once on Friday at her school... Saturday, nothing, but then again on Sunday at church... now on Monday... nothing else during the day tho, so it seems like a phlem thing. Claire did have some nice full diapers at her school in the morning. Mom had given her a liquid suppository (Fleet makes them) just before they left the house this morning. TMI?
Mom picked Claire up and learned she had thrown up in the afternoon. That was a new one, usually she had only thrown up in the morning. Mom was quite bewildered. Claire had some nice full diapers, many of them, so mom is hoping that is enough to stop the throwing up... fingers crossed on that one.
December 9   Claire had a pretty good day. She threw up at the nursery while the family was at church. On the way into church she was quite vocal and mom knew that wouldn't be acceptable during mass, so CB went straight to the nursery with a change of clothes (mom had an extra set in the car, but forgot the diaper bag - it was a crazy morning).
In the afternoon, Claire's big brother had a group project coming due, so the group came over to get it done... and done they did. What a relief to have that out of the way. The evening for him was spent working on another project due tomorrow.
Claire mellowed much of the day, ate really well, mom sometimes wonders if Claire could eat even more as she still seems hungry, but not wanting to see her food a second time, she's not so sure what to do about all that... so more smaller meals is on Claire's plate.
She had a nice evening, eating well and off to bed... slept great during the night.
December 8   Today was made for sleeping in and cleaning up from the party last night. Not too much to do, and big brother has a game this afternoon, so mom worked on fitting in a nap, tho not with much luck. The game was good, tho they lost and coach dad blames it on himself. Just a lot of missed shots and nervous kids. Mom kept Claire on her lap to keep a closer eye on her after the last game... and a cup next to them both in quick reach. Mom was informed during the game that Claire's big brother had a group project due on Tuesday -- so she offered Claire's home for them to meet tomorrow and hash it out.
The evening was quiet and peaceful. Big brother was at a party then spending the night with friends.
December 7   Today was busy.
First thing in the morning, Claire had her orthopedic appt. Mom learned that as Claire's bones grow, her tendons and muscles may not be growing/stretching as they should. The appt was initially to look at her hip joints, and they seem fine, but mom asked for xrays on her ankles too. If they were going to consider stretching her ankles, mom needed to be sure that her bones where in the right place and they wouldn't be putting bone to bone if they weren't... everything looked good, she has typical ankles, except for the fact that they need to be stretched out. Mom mentioned to the dr that for Claire's standing, she needed to be comfortable and didn't appear so... the dr said, 'Standing? what kind of standing?' ... mom pulled out her cell phone and showed the pix to him of Claire standing upright with only her hands being held for balance... he was very impressed -- mom was very proud!! Funny how mom was so irritated that all she had was the cell phone when Claire stood so well for the PT -- the images were so crummy she thought, but if she hadn't had and used the phone that day, she wouldn't be able to show the dr today! And Claire slept through the entire appt today, so she was not going to be showing off her standing... oh the irony of it all. The dr looked at the pix and noticed Claire bending her left leg and asked mom about it, mom said that was the concern.. the bending the leg because the ankle couldn't bend. The dr loooked over her ankle and agreed.
So the dr gave mom a prescription for AFOs (Ankel Foot Orthosis) and mom will address all that on Monday. The type mom was interested in were some Claire could sleep in and that could be adjusted - like braces on teeth - tightened to get the ankles stretched as needed.
Mom got to work late due to the appt and managed to spill coffee all over herself on the way to work. Somehow the lid came off the top of the coffee and it was like in slo-mo watching it spill all over car and driver. Mom left work early to shower and then off to visit the University president's new home - decorated for the holidays. She spoke with the pres and also with Bobby Bowden who was also visiting the home... a pleasant surprise. Dad came with her so it was fun to look over the home and all they had done to make it look as it had been there for many years.
After that little gathering, dad was off to get big sis for her ballet practice and mom was off to get Baire and then home. Evidently, the ballet practice was skipped as there was too much to do at home for the party this evening.
Claire didn't mind the busy-ness of mom's schedule, she was picked up a bit early from school and mom worked on getting more liquids in her since she was constipated at her school. She also had thrown up phlem in the morning, so that also meant more liquids could help loosen that stuff up more for her. Small Christmas party tonight and mom had a little baking and cleaning to do for that still. The party was fun, not as big as usual, but Claire enjoyed the attention and mom held her much of the night (when someone else wasn't holding her). She ate great in the evening and got to bed late as she was up enjoying the festivities.
December 6   Claire had a nice day today. She went to school and had a good day, mom to work and later in the day her brother had a basketball game. Since it was out of town, and mom had some things to get caught up on, she picked up the girls and got them home with a happy meal for one and mashed potatoes and applesauce for the other. Mom got a yummy salad and that took care of dinner so there was more time for play. Mom baked a couple desserts and cleaned up a bit for the festivities tomorrow. She got a call that Claire has an orthopedics appt tomorrow, my how things just fall into place, so she emailed her therapist to hold off on the AFOs for Claire until after the appt and the xrays.
December 5   Claire went to therapy today and her PT mentioned her concern once again with Claire's ankles not bending as they should. She suggested AFOs once more and mom decided they should just go for it. Mom asked if there were some she could wear at night, so the daycare wouldn't have to deal with them... also something that adjusts so they could tighten them, and also to keep from constantly getting newer ones.. so they picked one out and decided to send a request to the pediatrician. Her ankles measured +10 on both ankles one way and -8 and -25 the other way. (as best as can be recalled). The -25 meant that she couldn't lift her ankle more than that and seems to explain why she was uncomfortable standing on that foot... her left one. You can see it from the photos she is bending her left leg a bit.
December 4   Another busy day for Claire's family. After work, mom had a dr appt on the opposite side of town as work... then picked up Claire back on the side of town close to work, then home to get dad and get to big brother's game. Claire's sister was picked up by some friends who also drove Claire's brother to his game from school. At the game, mom was watching so intently that she didn't notice Claire had thrown up all over herself. Fortunately, mom thought no one else had either and quickly cleaned her up as best as she could. whew. Mom should probably be used to that by now.
December 3   After a nice weekend of cleaning and starting to put up Christmas Decorations, it was almost nice to get back to work... ;o)
November 29   Claire had a good day. Mom picked her up as she was being fed and let her finish her afternoon snack before whisking her off to her big brother's basketball game. He won. Dad coached and all was right with the world in the evening until mom realized how much she needed to do, including dubbing the game video onto DVD and working on some online Christmas gifts. It will probably be an all nighter... not because of Claire tho.
November 28   What would typically have been a Claire Day, turned out to be only half a day. Mom kept Claire home in the morning, and then off to therapy, but knowing she had a meeting tomorrow to prepare for and the other deadlines looming, she knew she should get in to work in the afternoon and check on staff to see they had everything they needed. The dr called and said Claire's bloodwork was fine and her levels were normal. Mom was a bit worried as that means she just waits for another seizure... and she hasn't seen one since Tuesday, so she's trying to reason that it was just a fluke.
Claire's therapy went well, tho her therapist noticed her left foot turning under (the outside of the foot rolling under) and thought it would be of concern if it wasn't looked at soon.
Mom drove in to work, and her boss called her to let her know things were pretty well finished and looking good for tomorrows meeting. whew.
November 27   Work has been so busy mom knew she would also need to be on her game there with staff out and 3 deadlines this week, training from 12:30 to 4:30 - last in the series to get her certificate... then she knew she would need a dr appt for Claire this morning and bloodwork done to check her levels of her meds to be sure that was okay... and then big brother had a game at 4:30pm - on the way to the game, mom called the dr office to see if Claire's bloodwork was in - waiting for a call back... it was a busy day/night and when mom was done and everything was taken care of, she was pretty content with herself. Even went out with friends for pizza after the game. <can you say 'whew!'>
November 26   Claire seemed to have a good day. In the evening, her brother noticed she was doing something unusual and called mom. Mom noticed she was having a seizure. Mom wanted to give her meds, but she was twitching her right arm and leg in a rhythm - almost to music - but noticably reflexive and not intentional. It had been so long since the Peanut had a seizure like that. Mom is thinking... 'go to ER... call the Dr... wait it out... crank up the O2... go to ER... wait it out...' She opted to try to get Claire her meds... measured and put a tiny drop in her cheek, but she couldn't swallow in a controllable fashion, so mom was thinking she would just aspirate and bring on another set of problems for the Peanut... frantic... Claire finally came out of it... could have been 60 seconds, could have been 5 minutes... seems like forever. She put Claire on a very low amt of O2 - hooked her up with the canula and felt like, if Claire had another seizure, her next breath would be a good one full of oxygen. Mom fell asleep, clothes on and all, and when dad went to bed, mom changed to pjs and was on watch.
Mom vowed to keep a close watch all night... as long as she heard her breathing in the monitor, she felt Claire was fine, so about every hour she was up listening... or running in if she didn't hear anything. It was a long night for mom... sleeping intermitently.
November 25   The trip back home was pretty slow in spots, but not as bad as the trip going, so mom was happy with that. Claire was loud the first half and when they stopped for lunch, mom adjusted her when putting her back in her seat, so she was pretty happy and fell asleep for the remainder of the trip. She had a good evening, tho mom measured her meds, she forgot to give them to her, and she got them late. So late that mom opted to get her back on schedule, but didn't want her having too much meds, so only gave her 1/2 a dose... mom doesn't like messing with it, but what is she going to do?
November 24  

Claire was still eating like a champ and mom filled her up and left her under grandma's watchful eye... then off to the store she went. IT was close enough to walk and she took Claire's big brother, but she was smarter than to think she would walk home -- what, with ALL the bags. Claire's aunt offered to drive up to get them when they were checked out... and that worked out great. Mom got most of the presents for all the neices and nephews and that was the bulk of her Christmas shopping. She also got wrapping paper and wrapped and labeled them... go grrl!
When she got back, Claire was snoozing and she let her be.

November 23   The busiest shopping day. Mom had big plans of dad watching Claire and the kids and she would go shopping... first thing... up to face the crowds. She had one store picked out and thought that would be all she could take. Eventually, as the grrls came and went (Mom's sisters followed through on their big shopping plans), mom opted to take a nap, the girls wore her out just watching them. Then she opted to just wait until tomorrow and take it easy... good choice as the grrls said the sales weren't that great and odds were they'd be pretty much the same sales tomorrow... just with smaller crowds. Mom didn't need much convincing. Meanwhile, Claire is eating great, sleeping well at night and getting lots of time with Grandma - rocking and cuddling and just hanging out on her lap.
November 22   Ah... it's Thanksgiving Day and Claire and her family have much to give thanks for. They are visiting the grandparents, eating yummy food and enjoying family and friends. IT is a good life and they are very blessed.
November 21   Mom was up and packing. Still didn't get done at a reasonable time, but out of the house and on the way to gmas. Eventually, they would hit a lot of traffic on the interstate, stop to see a friend who just lost a parent and deliver a ham, then stop to get flatware for the gparents and eventually get to their destination. A very busy day, Claire and her sibs travelled very well and mom was proud of them all. She also appreciated dad making all those stops and not fretting about getting where they expected to be when they originally expected to get there.
November 20   Mom got Claire off to school and then off to work. She had a class in the afternoon and then Claire's brother had a basketball game. Mom wasn't able to make it to the game, but met friends and family afterwards to celebrate her birthday... that was big fun. Claire enjoyed herself as she spent some time in her bumbo, but much of it on Daddy's lap and eventually fell asleep during the pizza party.
It was a hectic day, and when the family got home, mom planned to pack to take the family to grandma and grandpa's for Thanksgiving. She was just too tired, so she opted to do it tomorrow.
November 16   Claire still seems a bit under the weather, but mom thought it would be good to have a few more eyes on her for a bit and opted to take her to school for a few hours, get their opinion. She seemed to sleep better last night, but a little tired around the eyes. Mom asked that they keep her inside (it is chilly here - suppose to get to 26 degrees tonight) and also hoping that they will have her sleep as much as she wants. It isnt' about keeping her awake during the day, but rather getting rest whenever she feels like it.
November 15   Claire stayed home with mom today. The peanut was up all night pretty much, very uncomfortable. In hindsight, it could have been constipation. Overall, it is safe to say that neither Claire, mom or dad rested well. Mom made an attempt to catch up on rest after feeding Claire and giving her some motrin/cold for pain and congestion. Claire did okay, not sleeping much during the day either.
In the evening Claire was beyond 'fussy'... she was crying. Something mom and dad don't hear much, so their hearts just melt when the peanut is in such pain. Typically, it only happens when she's constipated (mom gave her suppository earlier in the evening) or she has bad gas. She got Claire a dose of mylacon, but the peanut was still very unhappy, so another small dose (not feeling the first dose was enough anyway) and sat Claire up in bed with her and dad while they layed there trying to console the peanut. Sitting up helps Claire with congestion, breathing and if she does have gas, it helps her burp. Sure enough, in the dark, Claire took a moment from her crying to make a nice big burp for her parents. After that, she was still uncomfortable, but went from crying to fussing and then went to sleep. She had been back to her crib when mom heard the fussing stop, almost abruptly, so mom had to check on her... outside Claire's bedroom door, she heard her stirring around and knew she was just more comfortable... yeah... mom was up with Claire a time or two more during the night, only to check on her and see her happily playing in her crib, exercising her legs and smiling. <whew>
November 14   Claire was fussy during PT today. She still did okay with standing and proping... runny nose and all, but overally not as fun as usual.
November 13   Daycare as usual, Claire is doing well and happy camper.
November 12   Claire was out of school today for Veteran's Day holiday. Her sibs were too and had a friend over. They played outside much of the day and Claire was out with them enjoying the gorgeous day and fresh air.
November 11   After Claire's little fever yesterday, mom opted to keep her home from church today. Dad went and took the sibs. Afterwards he had an open house and that kept him busy much of the afternoon. Mom cleaned much of the weekend for company next weekend and trying to plan a few presents for family. Claire was very perky and happy, you would never know she was sick the night before... she bounced right back. Folks can say that Motrin and cold medicine don't really affect a child's cold (infant cold meds taken off the shelves recently cause of parents overdosing infants) but mom thinks differently. No fever today and Claire doesn't even have a runny nose today.