Busy Day

Wednesday was a fun and very busy day. Mommy woke up very sleepy as usual, around 9:00 and when Daddy left for work her and Holly had breakfast. Today we ate Sweet potatoes. When we go to the store later this week we will get more YoBaby for Breakfast which Holly really likes. She wasn’t super into the Sweet Potatoes or maybe just the sitting still so she only ate like 2/3 of it and then we went to play. She tired herself out crawling all over the house. Her new favorite play area is by the front door. Currently this is safe, it is just hard wood floors, which I am not worried about her falling onto anymore and a Bag of Ready to Recycle Magazines and some closed boxes she can use to cruise on. These boxes currently block her access to Mac’s tank (The Turtle) and my Ceramic Shelf.. Which Alas in a few weeks I will have to figure out how to Child proof. Once she wondered all over.. Into the Kitchen, her bedroom, the Front Entrance.. Zooming past her toys and simply exploring she was exhausted.. And so was Mommy so we laid down for a nap.

We woke up just in time for our session with Sally and she brought for us fun new games. First we had a little Holly Sized Chair that she could sit on, and this helped her to focus, strengthen her trunk, bear weight on her feet and practice new balancing. She then imitated Sally and actually used her mallets (tools) to make sound on the Piano / Xylophone. It wasn’t super coordinated and at first I think it was by accident because she was banging together the “two” mallets but then when we cheered for her when she used them to hit the piano and make noise she was happy and smiling so she did it again and again and again. She also had some great transitioning positions getting up and re sitting down into the chair.

Next we played with a vibration pillow. This is used for Sensory Integration Issues, and it is a cool cusion with a neat texture that when you put pressure on the center it vibrates. She did this with her butt sitting, with her hands in a crawl with her feet standing and kicking and in general we were just introducing her to this. We don’t know if she will have any Sensory issues, but it has the possibility of helping her to focus and to relax. She has the Alien toy that vibrates and she is afraid of it, it makes her cry. When you touch his hand which she did by accident it activates him quite suddenly and he shakes and talks and you can’t turn him off until he cycles through. With this pillow it only vibrates when you are putting pressure on it, so when you had enough it stops. So since she previously didn’t like vibration we slowly eased her into this. She tolerated it and on occasion in some positions laughed. Sally left me with the pillow so I could work with it during the week and see how she likes it.

Next we played with her basket. She has a perfect laundry style basket that is the right height for Holly to Cruise around, then we put her inside and we spun it around and around. She had to learn to balance while it was moving and since she was holding on with each hand side to side her arms were stretch out more then holding on in front of her and then she would sit stand sit stand inside and while it was rotating all good intermediate positions and exercises for balance.



Then we put a pillow and a Blanket inside and Holly sat on those and we tipped the basket. When it was tipped back she didn’t like it and she moved in a way that strengthened the muscles that are already too tight, but when we tipped it forward she had to balance herself in a way that strengthened the right muscles and loosened the others and she had fun with this. Also she was focused and “stayed put” since she was sorta captured in the basket so Sally could work with her and she was focused. Normally she is all over the place wondering around and around. So it was overall a great session. At the end she climbed into and out of the basket (filled with Blankets) and from a pillow and then onto the couch. It was a little scary for her to climb into it as it was not the steadiest of surfaces so she needed a lot of help from Sally, but she climbed out and onto the couch almost all by herself which was great.

After Sally left I had only about 15 minute’s to get out of the house to run my errands, I knew I wasn’t going to make it but I tried. By the time I got dressed, got the Diaper bag ready, bottles, and dressed Holly in Warm cloths it was 2:20… So I was only 20 minutes off Schedule. I picked up all of my bags and the keys and my purse and Holly’s Blanket and then Holly and ewww… I realized she had a poopie Diaper.. Not expecting that, as she had one in the morning.. But I told my self this was better then ten minutes from now at the Post Office.. So by the time I changed her and redressed her it was almost 2:45..

In the car to the post office.. I had 3 large boxes I was shipping.. VERY late Christmas presents and I had to try and get Holly and these boxes into the post office. So I brought this large Ikea bag, but only three fit inside.. so in the end I let Holly hold the lightest smallest box and lugged the other two behind me as I pushed the stroller. When I arrived there were three tellers working and 4 people ahead of me.. Moments later two of the workers disappeared. Then over the next 15 minutes I see one of them putsing around on the computer and the people in front of me have many boxes and complicated overseas express mail and were taking forever, so I ask if she is opening back up, and she says no I am off the clock and she can’t close out her register and asks the ONLY one working to help her.. YIKES. By this time 4 people were behind me not counting the two who left tired of waiting.. Finally they find the third person who helps the one clocking out and they are having network issues.. So I politely complain, since there are now like 10 people in line its be over 30 minutes and I am still waiting. She tells me that this year they are all very disgruntled and that they won’t hire enough staff to cover all of the work load and that none of them have had breaks and this woman worked the last 10 hours without one and basically they don’t care if customers leave or are upset because there is nothing they can do and I need to cal the 800 number and complain to the US postal Service. She was nice about it, and I was too.. But wow.. OK..

Finally Its my turn I get my two packages out and I have 5 minutes to get to Holly’s pediatrician’s office who then calls me once I am 5 minutes late.. But I make it not too late and they see me.

Her Pediatrician is thrilled with Holly, she could not be happier. She did give me a referral to get a c-spine (Neck Spine X-ray) She said that Holly looked rather hunched even when playing and asked what her PT thought about it, and I told her about what Janice my Aunt the Chiropractor Said, and we discussed Cranial Sacral stuff also. She said that the X-ray would most likely just rule out anything like cord tension causing her to have the hunched shoulders and then that way we knew we were on the right track with the work her other Therapists are doing, but if we did find something, then we could do more targeted work depending on what it was. I talked this over with Joel and since the Doctor said the X-Ray was safe and not worried about it, he said it would be ok with him too, if it would make me less worried and less stressed. Its not that I think there will be anything, but I really don’t like the not knowing, and this will rule it out. Particularly because she is prone and in most cases much more likely to have low tone.. The fact that she has high tone which is against the norm for fragile X might be an indication of another underlining issue. So why not rule out any skeletal issues.

I am supposed to go back to the UC Davis Mind Institute sometime in the next 30ish days, so my Pediatrician asked me to keep her posted and try to make the appointment for a Thursday so she could come with us. She is so excited about all of the work being done right now with Fragile X, she really wants to meet Dr. Hagerman in person and find out more about everything. It was funny while we were talking she mentioned her other patient who has Fragile X and was saying that he had a Vibrating toy and it was amazing how focused and attentive he was when he was hugging it, it was like OMG he is talking to me and not all over the place and brought up some of the Sensory things, so then I told her it was a coincidence, because just that morning we were working with a Vibrating Pillow, so she was so impressed that me and the Therapists are so on top of things, and I am pretty happy about that too. She said she had read about it before, but just couldn’t believe the night and day results without seeing them with her own eyes.

After we finished talking Holly had to get a TB Shot, so in 3 days I have to check her arm to be sure she doesn’t have any reaction. She is a Pound heavier and a Inch Longer compared to last visit (2 months ago) Weight 17lbs 14ounces Height 27.5 Inches and her head was 45 Centimeters. Her body is in the 25 Percentile.

The Doctor also asked about her eating, and I was telling her how she must have been going through a growth spurt because she went from eating 26-20 ounces of formula a day to 30-36 this last month. So she told me that by this age she should not be drinking any more then 30 ounces and I should limit her intake. If she drinks more then that the too much calcium prevents her body from absorbing all of the iron she needs, even when its iron fortified formula. So she said I need to increase the feedings, or at least the decrease in bottles will motivate her to eat more food. I am up to twice a day plus a chewing snack, but I guess I will have to try for 3 times. Tonight I fed her at like 6:30 but she was not into eating, she only ate about ½ of what I had for her, so then instead of her bottle at 8:00 I had Joel feed her again. He was so impressed with how well I have taught her to eat, she did it with no resistance opening up and taking every bite. She ate the rest of her Green beans and Rice Cereal, the rest of her Sweet Potatoes and Oatmeal and a ½ container of Bananas for Desert. Her quota allowed for only 2 more bottles, so that put off her next bottle until 9:30 when Joel was trying to get her to go to sleep. I am not going to be uber strict about it, but I do want to keep an eye on it, so she gets the right balance of food, and the Doctor thinks her more frequent need for feedings is an indication that she wants more food. She still has a bit of a gag reflex on people food but we slowly keep trying little things hear and there.

After the Doctor she fell asleep and I picked up our Veggie Box and went to the pharmacy and then home. It was a busy busy day. Tonight, besides eating she ran all over the entire house about 20 times and Joel got to chase her for a few hours it was great. It seems Holly wanted her Momma to put her to bed, alas, a two nap day but she was asleep by 11:00,,, Hey its better then midnight.