Does anyone else feel like time has just flown by since Halloween? I honestly don’t think I’ve had a chance to catch my breath between then and now! Although there’s been some hardships we’ve been dealing with, overall I can say that we’ve been having a lot of fun! So here I go attempting to play catch-up again. This will be one of my goals in the new year, to keep this updated (after all, this is my journal for the kids).
I realize that I never did an update on Annabel and CHAMPs, only on her walking. CHAMPs was awesome for her this time around! With her right hand constrained she can now purposefully activate toys with left, pop bubbles, bring a spoon to her mouth, and is getting great weight-bearing and excellent range! And she continues to walk independently, mostly when she has the constraint on her right. We are very encouraged by the outcome and it is likely she will repeat this program, possibly next summer.
For Halloween this year my in-laws came to MI for the weekend. This year Johnathan was a dragon and the girls were fairies. They had their party at school on Thursday and walked in a parade around the school. On Sunday we went to Three Cedars Farm and played in the kids area, eating cider and doughnuts. Sunday night we went trick-or-treating and Mady and Johnathan were very in to it, Annabel really just wanted to walk around though and it was so cold so she didn’t stay out very long.
November:
On November 2nd Annabel had her swallow study and we learned that with liquids she is aspirating at times, especially with an open cup. So we are now thickening all of her liquids and are praying that she will outgrow this as she continues to develop her muscles/tone in other areas. So far she is accepting the thickened liquids fine, what she doesn’t like is having to wait for the liquids to thicken up, she just wants to drink when she’s thirsty (can’t say I blame her??). The plan is retest her in 4 months.
On November 5th Johnathan had his pulmonary follow-up and they were very happy with how well he is doing, both with weight gain and not having respiratory problems!
December 6th we went and saw Mickey’s Magic Show with our friends the Shigley’s and Storch’s. We were given a complimentary upper level suite which was so nice with the kids, especially Annabel.
On the 7th we had our friends’ children b-day party at Bounce. All 3 kids had fun playing on the gymnastics equipment!
On the 8th B.J. and I celebrated our 7th wedding anniversary – we’ve officially been together between dating and marriage for 10 years now!
The kids had their dentist appointment on the 11th and everyone’s teeth are looking good. Johnathan and Madelyn have all their teeth in, Annabel’s 2 year molars are not quite all the way thru yet. Thankfully Annabel’s grinding is not showing any wear on her teeth, it’s hard to imagine it’s not! They all received fluoride and will be seen again in 6 months.
November 12th Annabel had her yearly CT to look at her VP shunt. I was very proud of her as she didn’t have to be sedated! Everything was stable and the doctor said that next year she can this new Fast MRI (1 minute) so there will be no radiation and she won’t have to be sedated. Yeah!
On the 13th Annabel resumed with Hippotherapy. She was so happy to be back riding and did great vocalizations and focusing on the instructor!
Thanksgiving:
This year we left on the 19th for NY and returned on the 27th. We left with all three having a little cold, mostly coughs. Once we got there on Friday Mady was not acting herself, very tired and only wanting mommy. That night she woke up crying and when I got her up she had spiked a temp of 101.5. So I headed out to get Tylenol and the next day she was fine other than still be clingy to me, not eating/drinking much, coughing, and being tired. That night she spiked a temp again before bed. By bedtime it had come down. At 1:00 a.m. she cried out again, it had spiked back up. She was also then breathing faster, not having difficulty breathing, just breathing fast (I think mostly from being scared). I decided to take her to the ER (my initial though was pneumonia). They gave her a breathing treatment, did a chest xray, and ran a few other tests. What came back positive was RSV. Agghhh!! After 2 years of synagis and being so careful they ended up getting it. The doctor said she’s sure they all had it if 1 did. Thankfully they all handled it well (Johnathan the best, go figure, the one who has the most respiratory issues), with no one needing oxygen, just albuterol. They decided to keep Mady for a night and gave her prednisone. If we had been in MI I would have taken Annabel in to, I think she would have benefited from the prednisone too. The whole situation was exhausting and a little scary being in a place we didn’t know. The hospital did great but it was a very different situation from what we’re used to – Mady was the ONLY pediatric patient, they had to open the ped floor for her! Needless to say she was quite spoiled, she came home with 2 new Barbie dolls, a Ken doll, crayons and coloring book, magna doodle, and handmade pillowcases for all 3! Thankfully they were all feeling better by Thanksgiving Day and they all enjoyed their turkey dinner!
So the whole reason we go to NY for such a long time at Thanksgiving is so that B.J. can hunt with his Dad and brother-in-law. Thru all this B.J. didn’t get quite as much hunting in as he would have liked. Thankfully, on the last day possible he ended up getting a very nice 10 point buck! Or Daddy’s Big Buck as Mady calls it! We’ll be getting our venison in a few weeks so that will be good for cooking! There is such a difference between Mady and Johnathan, Mady is so much more comfortable with animals, even touching the deer whereas Johnathan would barely get close to it! Despite everything we had a very nice time in NY and the trio got to spend some quality time with their Grandparents and with their cousins.
The weekend we got back from NY we got the tree decorated and the outside lights up. Mady and Johnathan are very into Christmas this year – Santa, Baby Jesus, presents, the whole works! I can’t wait to see them on Christmas Day!
Last weekend we also had the trios big kid bedroom furniture delivered and moved Johnathan into his own room. So far they are all doing great at night but naps are a little iffy. Annabel has not yet successfully napped in her new bed and Johnathan needs someone in the room until he falls asleep. I will post pictures soon but we’re not quite done decorating yet. : ) We also had our Christmas with my cousin Renee (also Johnathan’s Godmother) and her fiancée Jordan and on Sunday we had our multiples club Holiday party.
Yesterday the kids had PM&R in the morning and I am so happy to announce that they’re all starting to gain weight!! Mady and John weighed 26lbs and Anna weighed 26lbs 2ozs. The girls are both 3 ft tall, John is 1 inch shorter. Dr. Hornyak is very happy with how they’ve progressed! Johnathan no longer needs to wear orthotics! The kids have continued with all their therapies, minus one. Johnathan is officially on a break from outside speech therapy, he has caught up so nicely that we’re going to take a break and see, he may not need to go back?!?
One final thing – please keep Annabel in your thoughts and prayers. Over this past month she has been fighting thru colds (and RSV) but has also been dealing with some migraines and possibly a seizure in there too. We are trying hard to figure out what’s going on (it’s so hard with her limited speech, she can’t just tell us) and what the next plan of action should be. The last thing I want to do is start her on a daily treatment for something that’s not needed and that could affect her negatively cognitively, behaviorally, developmentally. I am taking her in to the eye doctor tomorrow; I am suspicious if her lenses could be triggering the migraines as they are very scratched/dented up. We had been waiting on ordering new lenses because ideally they’d like her in a higher script but wanted her wearing her glasses more first. She is now wearing them but I think it’s time to order the lenses so I need to know what script to order. Would be nice if it’s an easy fix like that! She has also continued with her naughty gagging behavior, at times worse than others. This is probably her worst issue as far as how it affects the whole family and there are times that it really weighs on us. So please, if you can say an extra prayer for us to be able to figure some things out to help her I would appreciate it!! Thank you and may you all enjoy a very Happy Holiday season!!
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