New happenings:
1) Johnathan now weighs 24lbs 6ozs, Annabel actually lost a bit and is down to just over 24lbs, and Mady is on a gain, almost to 23lbs.
2) On Friday the 12th Annabel started pulling herself up to stand on the entertainment center! She loves being up so high but hasn’t quite figured out how to get herself down safely yet. She’s truly mastered the pulling to stand in her crib now, making it look like a piece of cake! She has been doing so well lately with play, following instructions, mimicking, transitioning, etc.
3) We started swimming lessons on the 11th for Mady and Johnathan, I will be alternating weeks with them. They are ½ hour sessions, right after their therapies at DMC. Mady went first last week and she did as I expected. She has always been more timid around water and is more timid to new people/surroundings, wanting me to “save” her. So, I ended up leaving the pool room and she calmed down pretty quickly, the instructor simply walked her around the pool this first session, getting her used to her and to the water. I think it was a success and she’ll be doing well soon! Johnathan swam for the first time last week and he started out doing great, kicking, pushing and pulling with both arms and just loving the water. Half-way thru I think he got confused and thought I had left the room (he doesn’t have his glasses on) so he got scared and wanted out. The instructor was very happy with how well he did and I think he’ll continue to do well!
4) Mady has really soared lately in her speech, starting to use full 3-4 word sentences! Her latest is “I love Momma, Dada, John, Anna, xxx”, pretty much everyone in her life! She has also started using plural form for things, so socks instead of sock. Johnathan has also been catching up nicely in speech. His therapist commented last week on how well he is doing, that his clarity is so good, indicating that his hearing aids are adjusted right on. He very easily could have had a speech tone more similar to a person who is deaf given the significance of his hearing loss but thankfully he does not. Annabel also continues to excel in speech, last week at therapy she said “done” for all done. So now she has around 9 words she’s been saying.
5) Annabel had her final hippotherapy session with Bobbie on the 6th for awhile. She had a great session and we will miss that therapy but thankfully we’ve been able to get her in to an extra land PT session for the few months she’ll be missing hippo.
6) Johnathan is still having problems getting his food down sometimes. It is so inconsistent, sometimes he handles food fine (like pancakes for example) and other times he chews it up and then stores it in his right cheek, not swallowing and eventually we have to pull it out. Some meals this means that he hardly eats anything except for drinking his milk/carnation. I have figured out that if we can get him to eat something softer after packing in the other stuff (yogurt, applesauce, pudding, ice cream) then he does get most if not all of it down. Originally we thought it was a chewing/lack of strength issue but now I’m concerned that maybe it’s swallowing or a lack of feeling on his part, not knowing that his mouth is full? I have decided we need more help with it so I’m in the process of getting him in to an extra weekly OT session to help so hopefully we’ll get things figured out and him eating more normally soon!
7) Johnathan has been doing so much better with sleeping in later! I had researched the Good Night Lite http://www.goodnitelite.com/index.php and felt that it might be a perfect fit for Johnathan and it has worked wonderfully! He had been consistently getting up between 5:00/5:30 and since it was so early we were then bringing him to bed with us (the trio are still in the same room and if we tried to put him back down he’d just scream/cry/puke and wake the others who would then scream/cry/puke). Sometimes he would fall back asleep and sometimes not, as you can imagine it led to us being overly tired as well as him being cranky. So, we started using the good night lite, having it come on as the blue moon at 7:45 (bedtime is 8:00) and at first changing to the yellow sun at 5:15. After a couple of days of him consistently sleeping until then we moved it another 15 minutes, continuing on until we are now at 6:30, soon to be moving to 6:45!! All of this has only taken a couple weeks. Some days we do hear him get up but he looks at the light and sees that it’s still a blue moon and goes back to sleep. And this is without his glasses or hearing aids on!! So if anyone else is having issues like this I would highly recommend this light, best $ spent!
8) Mady and Johnathan have been so cute playing lately. All 3 love music and dancing and lately Mady and Johnathan will decide to go on a “walk”. She will grab his hand and say “go on walk” and they’ll walk around holding hands. Love it!
Their favorite show right now is Barney and at the point when he sings “I love you, you love me…” they go up to each other and give each other hugs and kisses. They are just starting to get in to dress up, playing with hats, carrying their bags around, etc. I love watching their imaginations soar!
9) Last week was not a great week. Tuesday night Annabel had aqua and partway thru the session she started getting upset with an on and off cry. Towards the end she started crying hysterically (very odd of her) so we stopped the session early. When we got home dinner wasn’t quite ready so we went outside and she was swinging, happy and giggling. She ate dinner well and went to bed. I heard her coughing a little (not rare after swimming) but not crying at all. She was still coughing a bit after an hour so I checked on her and was covered in puke. : ( When I got her up she got out a bit more, to the point of getting out blood. She then started doing what we had been worried about in December, the horizontal fast eye shifting back and forth, moving her head with no purpose, us not being able to get her attention, she was cold and pale, and this time she also had a very fast heartbeat. We bathed her and she stopped puking and eventually became more like herself but did not settle in to sleep until 12:30. The next day she drank some of her milk but did not eat, spitup/puked a little and was very tired. Thursday she was drinking well and eating some soft food but still not real active, by Friday she was finally back to eating and drinking normally and playing like normal. On Wednesday I did a little research and I fear that she may have had a partial seizure, also having had one in December in and possibly October. Thankfully partial seizures do not cause further brain damage and if they are few and far between she may not need any meds. I learned that constipation (which she had been dealing with the last 2 weeks) can trigger a seizure as well as change (her therapist at DMC and at aqua changed recently), as well as coming down with the flu (like what it was expected she had in December). So, Annabel will go for an 1 ½ EEG on 4/1 and will then have her 1st neurology appointment with Dr. Carlson (who saw the kids in the neonatal clinic). Please say extra prayers for Miss Annabel that his is nothing serious, that she will outgrow them and that any seizures she does have will not hinder her in any way or require her to be on meds. Poor little peanut now has something else to overcome.
10) Monday morning the kids finished their 2nd round of the SMILE preschool group. They did so well! Today the teacher and 2 therapists from the 4 day, ½ day program and the teacher from the 5 full day program came to evaluate the kids, specifically Annabel to give their recommendations. Overall they were amazed with all 3 kids, pleasantly surprised with how well they were behaved (sitting and participating during story time, raising hands for turns, following orders, Mady and Johnathan matching colors, etc.) They believe that Annabel’s strength and feistiness will help her to get very far in life but they’d like her to spend some time in the 5 day program in order to work on her gross motor skills, ideally getting to the point where she can transition better on her own, in and out of a chair, possibly getting in and out of a walker herself and just overall mature in her development. Right now Annabel is about 9 months to a year behind the other two in a lot of her play and actions. Currently, if someone would have to move her from one activity to the next, by the time she’s situated the other kids are well in to the activity and then by the time she gets in to it the activity is over so she never gets the benefit of what was being done. They all recognize that intellectually and even motor-wise she will be “high” for the 5 day classroom and that the lack of children with verbal communication is a negative but thankfully she does have Mady and Johnathan at home to help with that. The 4 day teacher/therapist were going to visit the 5 day classroom yet today and give me more thoughts after that but I believe we’re heading towards putting Annabel in the 5 day room to start. She can transition at any time if she’s ready to so we will make her IEP goals centered around that, I think it’s very important for her to progress on. They all believe she can and will do it, she just needs a bit of extra time with some of her developments and the one-on-one attention that she can get more of in the 5 day program. By doing this she will start this summer in whatever program is offered (generally a 3 day a week) which I think she will benefit greatly from. It will be hard to separate them but since the goal is to eventually get them back together I am more ok with it than I thought I would be (remind me of that when school actually starts!).
As you can see it is a very busy, yet exciting time in our lives! Thursday morning we have ophthalmology, not expecting more than a routine visit but you never know. Unfortunately it has been almost 4 months now that Annabel has not been wearing her glasses (this is one thing she can control and is doing so!) and therefore no patching is being done so I’m sure Dr. Archer won’t be thrilled by that. Thankfully she doesn’t seem to have gotten any worse with her strabismus but she also hasn’t gotten any better. We work so hard with her to keep those glasses on but sometimes you just have to pick your battles. I am going to get a referral for Annabel so that the low vision consultant (who Johnathan sees) will also be able to see Annabel given that her strabismus does affect her development and eventually learning in the school environment and she may need some assistance for that down the road. Time to go to bed, it's been a long week already!
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