Doctors and More

So on Wednesday after our session with Sally we decided to get Holly’s X-rays done. I wanted to have them to bring to Dr. Hagerman’s office, but I hadn’t been able to go earlier because there was an issue with the Insurance Authorization. When I arrived it was a nightmare, we spend over 30 minutes in the parking lot looking for a spot, at one point I left the lot and came back in, because the first 20 minutes are free and I wanted to reset my time. I was worried we wouldn’t make it because Radiology closed at 4:00 to walk in patients. At first we had to go to registration which was different then when we had the ultrasound done. We spend a lot of time in the waiting room there. And when we finally went to registration there was an issue with the insurance because they had two Holly’s listed in our plan, one male, one female, and with the birthday of 01/02/2002. I was able to get it all worked out and they sent us up to Diagnostic Imaging.

When I got there we hit Hurdle number two. Hey didn’t have the referral from Holly’s pediatrician on file. How something like this happens I am not sure, since it was faxed twice, the first time over 6 weeks ago, and then the second time the previous Friday. Thankfully they were able to call her and she faxed it yet a third time. This of course meant more time in the waiting room, but since we were in the queue it was ok that 4:00 PM came and went. Holly was very active and didn’t want to stay in her stroller. Since she would have to stay still for the X-Ray I decided to let her run around the waiting room. Since it was a children’s hospital, it was pretty kid friendly. There was a book case with children’s stories that she preceded to remove one by one, and a large fish tank. She cruised back and forth along several rows of chairs, and when other kids came in to wait she crawled over to say hi.

After a while she got bored with the waiting room and headed out to the hall and tried to escape. The staff thought she was adorable and quite amusing, so I let her wander off down the hall for a while, until she got into something precarious, like trying to sit in front of a door or something and then I would bring her back to the waiting room and reset. There was this one little boy who was a few months younger then Holly but he was like 4 inches taller, huge in comparison, and he was very friendly, in fact he followed her around, he wanted to touch her face and pet her hair, and now I am remembering this is actually where she got her hair pulled. His mom was horrified, but I told her it was ok, and that Holly is normally the one scratching faces and pulling hair, so I know how she feels, and she is tough, and can take it. I picked her up and comforted her and then she was ready to play again, with the little boy even.

Finally they called us back, and I changed Holly’s Diaper so she would be more comfortable and the technician got everything ready. Originally I was told that I would wear a vest and could stand next to her but he would not let me. So I had to stand about 10 feet away behind a screen where the other technician was. It was in the same room, and very close by. So the X-Ray consisted of 4-5 shots. She simply had to lie down on the table and all was well. It was a little cold and since the films were under her she couldn’t lie on a blanket and had to have her top off. She was fine for the first two shots, but then she got a little wiggly and tried to pull her legs up, he pulled them back down, but then she tried to hold her ears, and he had to hold her arms down, so then she tried to do crunches and sit up, and he had to hold her forehead down. All this restraint made her very mad. The forth one had to be on her side and she couldn’t curl up so by that time she was crying. But this all took less than 2-5 minutes and I was quickly able to go to her and pick her up and as soon as she was able to sit up she stopped crying and was fine.

It was funny, I am sure the technician has done this 1000 times but between each shot he had to change the films and was not holding her and the table is rather narrow, so my worst fear was that she would flip over and fall right off. More than a few times I jumped forward to run to her aid as she began to wiggle when he wasn’t holding on to her, but then he would put his hand on her and she would settle and not actually turn and was fine. So once we were done there was a third waiting room we had to sit in while we waited to make sure the pictures came out good. They did not, and he had to do the last shot again. This time they decided to do it differently, in a way where Holly was to lay her head in a foam brace type thing and sit raised on a board. As soon as we went back into the room she got upset, realizing that I would be putting her down again. But it went quick. I held her while they set it up, and laid her down into the foam and though she didn’t like it, it only took about 60 seconds and we were done.


They noticed and made me take off Holly's Earrings during the second set of XRays. I have never done thins before, and actually needed to have the guy help me. I held Holly's head and had him take them off, I didn't have a strong enough grip or pull to get them to open. I stuck them in my pocket and when we got home cleaned her ears and the earring with the piercing solution and put them back in while she was taking her nap.

I was able to get a copy of the X-rays on a CD which is cool. It comes with this special X-ray viewer, and the pictures are not in a normal format. So when we got home I was able to look at them, not that I knew what I was looking for. One really cool thing was that we could see holly’s Molars, and boy it sure looks like they are ready t o start coming in. We really couldn’t tell what else we were looking at, but on Thursday our Pediatrician met us at UC Davis so she could meet Dr. Hagerman, and she said she spoke with the Radiologist, or X-ray Person, and they told her it all looked great, and Holly had no issues in her Neck, shoulder’s or spine. SO anything going on is definitely a tone issue and not related to any possible skeletal problems. I am looking forward to sharing the X-rays with Sally, I am sure she will find them interesting, and maybe even helpful.

UC Davis was a long day. We got up around 8:00 so we could leave around 9:00 to be there by 11:00. Thankfully Holly slept most of the way up there in the car, but that meant she was awake by 11:00 and would be ready for her afternoon nap sooner than usual. Dr. Hagerman was running late so it was almost 11:30 before we got in to see her. I didn’t mind much though because there were a lot of fun toys in the waiting room for Holly to play with and it was Dr. Jones first time really getting an opportunity to engage with her in a playful setting, and watch her go. She was amazed with her cruising and crawling and fine motor skills, and said that if we didn’t have a Diagnosis at birth she would have missed it, and not known Holly had a genetic condition, or noticed any significant delays that were cause for Alarm. But we talked about how it is so hard to know what Holly might have been like in that situation, because I truly believe she is doing as well as she is because of the early intervention services she is receiving, and I credit her therapist for her amazing progress. Well also her problem solving attitude, and determination.

Once we did get in to see Dr. Hagerman we met a Colleague of hers from the Fragile X Center in Chicago Affiliated with Rush University, and a Colleague from Korea. There was a 4th person Observing but I forget exactly where he was from, we met him last time we were there so he is doing an extended visit, unlike the Woman from Rush, who was just there for the Day. We talked about Holly’s Development and there were a few things I had questions about. I think I am being a paranoid, hypochondriac, over protective mother, but I somehow got it in my head that she might have a Mitral Heart Valve problem, which is somewhat common in Fragile X. I came to this fear because the Internet has too much information, and I was looking up sweating while sleeping in babies, trying to see if Holly’s profuse sweating was related to anything, or maybe had something to do with Self Regulation, and her fighting sleep. I found that sweating in your sleep could be a sign of a heart problem. I knew there were issues with Fragile X and the Mitral Valve so I looked it up, intending to rule it out. Then I read that it can cause breathing issue and rapid heart rates. Well just recently Holly has been gasping for air, catching her breath, when she is active. It is a little off putting, and while it is some days rare for her to do it at all other days she will gasp several times making her circuit across the room. I had chocked it up to having a stuffy nose and mouth breathing, and was keeping an eye on it. But once I read about breathing related to the Mitral Valve I worried.

Well, Dr. Hagerman, and Jones were very sympathetic and patient with me and both carefully listened to Holly’s heart and said that if there were any issues they would be able to hear it, and then follow up with an EKG, but this typically didn’t develop until someone was much older, and that her heart has always sounded amazingly strong. They reassured me her heart rate was normal, and I listened, and it seemed fast to me, but they said that is normal for a baby. Then later she did the gasping thing, and I jumped, “See, did you hear that?” and they had. They checked her out, but said that it was a common language development thing. She is playing with her breaths, learning how it works, and it isn’t very different then doing something like Raspberries. Her lung and breathing sounded fine otherwise and that I had nothing to worry about. I now know I was completely over reacting, but they said no, it is good to bring up concerns like that, because you never know when it could be something serious, and they were happy I was so observant and attentive, but that in this case she was actually fine.

We also discussed the Folic Acid therapy and I explained how I had not started it because of the way the pharmacy gave me vials for an IV with Syringes. She said that was crazy and that her Pharmacy made up a solution, and they could give me a 3 month supply and it was only like 20$ without even using insurance. So she wrote me a new prescription. She said if there was a compounding pharmacy locally, they could call her pharmacy for the formula when I needed the refill, but I should give it to Holly for at least 3 months. The solution is actually only good for 100 days, and needs to be kept away from light, so we plan on starting it today.


While we were there we let Holly crawl and cruise around the room, it is hard t contain her in one place especially in top of a table and while she was pulling up on the table leg, once up she let go and sat her self down. Joel said she stood for a few seconds. He pat me in the arm and asked if I had seen it, or if anyone had. I missed it, but the Specialist from Rush nodded her head, she had been impressed and saw it too.

We also discussed Holly’s Speech Therapy issues, and the value of having early speech therapy. She says her therapists start working with babies at 6 months old, and that in her report she will recommend that Holly receive Speech therapy two times a week. I am hoping her report goes a long way to get the regional center to approve services immediately. That said, she thought we were doing an amazing job working with her, and although she isn’t make as many sounds as she could be she was very vocal and seems to want to communicate which is half the battle. She looked in her ears and said they look fine but recommended we see an audiologist to test her hearings and do a more thorough exam to make sure there is no fluid, because ears problems are so prevalent with Fragile X kids, we want to be proactive about it. I had wanted to do this anyways, so Dr. Jones said she would do the referral in two weeks when we come in for our 1 year visit. Also she recommended doing an eye exam before she is 2. She is not currently on our vision insurance, so I need to find out if the regular insurance covers the exam, and just not the cost of glasses, which I am sure she won’t need, at least not now.

This was basically the Visit with Dr. Hagerman. It ran long, and our next appointment was at 1:00, so we only had 15 minutes for lunch, but Vivien the coordinator found us and told us we could take until 1:30, so we were happy to get the break. I was a little worried about Holly because she had been up since 10:45 and was starting to seem a little bit sleepy. We went down stairs after lunch and started the eye tracking experiments. We got through 3 videos before Holly was fussy and didn’t want to sit still anymore. We had actually brought our sandwiches downstairs so Holly could play a little before I was going to make her sit still, but she was ready to wiggle some more. So we changed her and let her play for a while and made her a bottle.

She basically whined through the next three videos but did make it through them. We took a break after number 4, because though she watched and paid attention she wined the whole time. So we took another break and worked on the Mullins. Before I describe that, I have something interesting to note. I thought Holly would do really good during the video’s because we watch a lot of Baby Einstein, but what I realized is that she likes to crawl all over me, and often watches over my shoulder, wiggling in my lap, sideways, ect. And for the testing she had to sit still in my lap and not flip, flop and wiggle. She didn’t much like that. But I never realized how much she did move around during out “quiet” time in comparison to being in a situation where she had to stay stilish (at least keep her eyes in the same place so they could be tracked.

When we did the Mullins test they had Holly sit on my lap so she would be at the table, and be able to do tasks at table height. We did stuff like showing holly a toy and covering it to see if she would look for it. She then had two covers and put the toy under on and not the other to see if she knew where it was. We tried a simple puzzle. She knew she was supposed to somehow put the piece “in” the puzzle and tried several times in several ways banging it on the puzzle to get it in, but didn’t. We also tried some nesting blocks, but in the way it was presented she didn’t do it. It is interesting because the Mullins is very specific, and you have to show three nesting items take them apart, put them in, take them apart and then Say, Holly you do? Or something to that affect. Then you can’t really help, point, or prompt her. What we do at home, is I point to the container and say, can you put it in, and then she will. But presented in a different way, and simply watching her do it and then be expected to do it herself, she wasn’t that interested and would rather chew the cup. In a similar way we did a matching test where there was a key and a triangle and then holly had the key, and she would say something like, show me which one is the same, Holly same? But she isn’t really that advanced yet either. I think we did some stacking which she isn’t doing, and then putting in and out. I think she passed that one. She had to take every item out of the container and then put every item back in. But about half way through putting them back in, she wanted to start taking them out again, so I don’t know how you score that. Then there were some gross motor skills which she is doing, except the independent walking, and they asked us about a few other things based on our observations.

All in all it went rather quickly, but she had a lot of fun sitting table height and doing the activities, so we are going to try that with her using the hanging on table chair, and try and teach her a few tricks.

After we went back and got through the last two videos, but Holly was very tired, since she had been up since 10:45 she was going on 5 hours, and she was doing very tiring tasks. We had to do a blood draw, because she still needs a final third test done, but they poked her twice and didn’t get a vein, so we said enough, let’s try it next time, and no blood was taken, but she sure wasn’t happy about it. They Had Baby Mozart, and put that on for her, and the prick hurt, I think if at that point they had found a vein and let the blood flow she would have just been whimpering, but they were looking for the vein, poking the needle around and pressing down trying to find it, so she was crying most of the time, but the whole thing was less than 10 minutes including breaks.

Afterwards we drove home. Holly slept in the car on the way back and that is pretty much our trip. They want us to come back in 6 months, and I will be scheduling that with Vivien.

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.

Weekend Update

Saturday morning is a big day for us. We are having a big family get together since it is the only weekend day I will be in Florida. Holly and I are still adjusting to the new time zone and while she wakes up around 8:00am we go to sleep and take a nap until around noon. We wake up just a few minutes before our first guests arrive and I jump into the shower, but they get here before I am done. My Aunt Janice a chiropractor from Saint Augustine, My Grandmother Pat, and Jeff Janice’s new boyfriend and “great grandma Pat’s” Jack Russell Daisy arrive.


While I was sleeping my dad went to the supermarket to get last minute supplies and my mom made stuffed shells. Just as Janice and Pat arrive she begins to make Chicken Cutlets, but breaks to prepare a quick lunch of Turkey on yummy Onion Rolls. It is the first rainless day since I arrived and Holly and I snuck outside with Opa to try out the swing which was a lot of fun. We got a little reprieve before the house would be crowded and full of people.



Holly loved swinging back and forth, but one thing I really liked when I was a kid was to twist myself round and round so the swing chain was tight and then let go and I would spin in a circle fast as the ropes unwound. Well we did this with Holly and she loved it, she went around and around and when she stopped her eyes kept going back and forth as she laughed and settled back into stillness.



Around 2:00 Joel’s Dad Jeff, his wife Cynde and their two other Grandchildren from Cynde’s Daughter Emily, 8 and Emory 5 arrived. The last time we saw the kids Emory was a little baby, so it was amazing to see how big they had grown.

As they were coming into the house Pyro ran out to meet them and he slobbered all over Emily.. She jumped back and out of the way and said Ewwww yuk and had to run inside and clean off her dress. It is funny, because by the end of the night she was grooming Pyro, cleaning off his drool and could not be separated from him. She followed him everywhere around the house and had found truly her new best friend.


Shorty after their arrival, my Uncle Joey (Janice’s Brother) his wife Tammy and their two girls Jolie 5, and Briana 7 arrived. The girls were adorable and it was the first time I had met Joey’s wife or the girls. Holly was surrounded by all her cousins, and they were all amazed with her. Briana looks like her Daddy and had long Dark hair and was a little shy and quiet. Jolie had super curly long blondish hair, and was super outgoing and very enthusiastic.

Holly had a chance to sit on the couch and visit with her “Papa” (That’s what Joel calls his grandfather) and her Grandma Cynde, but before we knew it, my Uncle Bobby (my mom’s brother) his wife Janelle and her two kids JV (Jenevieve) 14 and VJ (Vic) 12.

Now the house is pretty crowded and Holly can no longer be contained on someone’s lap, so I let her down onto her play mat and she is the center of attention. Emory comes over and wants to play. She has a big ladybug shaped bin filled with toys a little to “old” for her, but perfect for Emory.. A little shy at first I tell him to go ahead and take out whatever he wants and soon enough he warms up and digs in. Holly is intrigued and enjoys watching him play as she chews on various other toys.


My dad has this cool toy that is shaped like a log and has 4 containers sitting on top of it, a glass bottle, a can, on two others. It is for “Sharp Shooting” and one takes a toy pistol aims, and when they hit the target the container jumps off the log and breaks in two. This was hilarious and lots of fun to try and aim and hit the targets. So he set this up out back and the men go out and have a try, everyone takes a turn and has some fun, which also thins the room out a little and lets some of the kids run around outside.

My Dad also has a”Hockey” game. It’s one of the ones in a big dome where there are the levers on either side that you extend and turn to move your men around and try and shoot the puck into your opponents net. So after the Shooting Gallery he turns this on and of course everyone wants to take a turn at that.

It was great to have so many games and activities for people to do, as most of the various groups had only met 10 years previously at my Wedding and didn’t know each other. Also, Holly could only have so many play mates at once, so it was nice for people to have something to do when they weren’t hanging out on the floor with me and Holly.

Finally it was time to turn on the trains, and that is when the room really cleared out. I could not believe that so many people fit into that little room, but suddenly it seemed quiet and there felt like there were less people left in the living room then there were visiting the train room. I think people rotated in and out and that took about an hour. The kids really enjoyed that. I took Holly in to visit for a moment towards the end and Emily was sitting on the floor watching the subway go round and round, so there was something to look at and see in every corner of the room.

Just after this holly was ready for a nap, it had been a few hours and she had been up since noon and had a chance to visit with pat and Janice when they first arrived, so about 4 hours, since she last had a break, so I took her into the other room and laid down in bed with her. She fell asleep after about 15 minutes and was content.

The food was Buffet Style so people could grab whatever they wanted and find a seat, the counter, table, porch, couch everywhere people sat and chatted like old friends and enjoyed an early dinner. In addition to the Shells and Chicken my mom had finger food for the kids, Cheese sticks, meatballs, pizza rolls, and some Salad with banana’s and apples. Janelle made chicken and veggie spring rolls also. I grabbed some food and mingled and found Jeff, Cynde and the kids who were on the porch. They had brought some gifts for Holly so I decided this was a good time to open them.

One was a beautiful Hummingbird feeder. It was shaped like a long red crystal with a copper base where the food goes. We had been talking about how we are trying to make the patio nicer and Cynde thought it would be great to be able to sit outside and watch the Hummingbirds. I know we have them in the yard because one nested in my plumb tree and had a baby, so I hope this will entice them back.

They also got Holly an adorable little outfit, it was a white and yellow onzie and an Orange Corduroy dress with lamb buttons, it had a yellow and white sweater with a sunflower and a matching hat and little shoes. It was an adorable little outfit, and I loved the little dress and sweater.

About then it was time for the Magic Show. My Dad’s old friend Pat had come over a few hours earlier had some food and then began to set up. As he was setting up the crowd was abuzz, surprised that there would be even more entertainment. He set up some curtains in from of my parent’s office door, and had music and everything. While he was preparing I was reminiscing with my dad, who remembered where my mom had purchased the material to make those curtains when I was eight and he was doing magic.

He started with the linking rings and JV was his assistant. She was very shy but did a great job. While he was linking all 6 rings he would ask the crowed (the kids up front specifically) questions about counting and math, and little Briana would shout out the correct answers so excitedly, it was so very cute. Pat’s banter was very amusing and I had a laugh. During the next trick he asked Emily to be his assistant. Well she was “EIGHT” and had a Magic Kit at home, so she knew it all. She was so Snarky it was hilarious, watching Pat sweat and try to keep it together, keep her in line, keep it funny, and keep the other kids entertained.

The first step in winning her over was turning a little egg into a mouse. She actually liked it and through it was adorable. He did a trick where he drew a face and then the mouth sang and the eyes moved. He did a pistol and card finding trick with VJ and he appeared grandma pat’s ring in a box with Jolie’s help. He was able to include all of the kids, manage Emily’s snarky comments, and keep the crowd rolling with laughter. It was hilarious.

After the show everyone mingled and talked and it was just past 6:00, so I decided that 2 hour was a long enough nap and decided to wake Holly. I went in and tried to wake her, yet still she slept. Then I put the light on and left the door open but still she slept, then I let the kids each one by one come in and watch her sleep, but still she did not stir. I lay down beside her uncovered her and rubber her back and slowly she opened her eyes smiling at me rested and happy. She likes to wake up slowly, so I had a bottle ready and fed her in the quiet of our room, giving her a chance to welcome the world before the avalanche of guests.

We hadn’t had much quality time with Joey and Tammy so I let them each hold her and took many pictures, and then brought their kids over for more pictures and then holly went down to play and we took some more pictures of each of the little girls holding her in their lap and hugging her. Their Grandma Pat asked if they wanted another baby and they said yes, can we bring her home with us.

Then Jolie told me, Holly is my Cousin and I love her so much, she is so beautiful. It was so touching. The girls simply adored her and wanted to kiss and hug her. The Jolie asks, can we be the last ones to leave I want to stay here with Holly as long as I can.

While the kids were playing on the floor Jeff came back over and watched us play, then Holly wanted to crawl and explore and went over to him and stood herself up, so he picked her up and I got some pictures of him with Holly and then Emily came over to visit, leaving Pyro for just a moment to visit with Holly, and she got a turn to hold Holly as well.

Emory wasn’t very interested in playing with her, but that was ok, I got a ton of pictures of him playing and entertaining himself. Then I took some of the whole family. We had called Joel earlier while we were eating and I promised him I would get a lot of pictures of holly with his dad. I meant to take some Video also, but forgot.

By then things were beginning to wind down, Bob and Janelle left first, but they live in town and can see us during the week, next Joey, Tammy and the kids left to drive back to Orlando and about an hour later Cynde and Jeff pulled themselves away from Holly and left for Gainesville, of course getting kids out of the house is never fast and Emily had to run back inside 3 times to give Pyro one more kiss goodbye.

It was an exhausting day, but so much fun was had by all.

Janice and Jeff were staying in a hotel a few blocks away, as they came all the way from Saint Augustine and Grandma Pat stayed the night with us. So it was still another hour or so before Janice left. After a short break she came to “play” with Holly and check out her back, neck, and shoulders. She thinks that she may have had some compression in her cord while in the womb / delivery, as the spacing between her lower back is good and a little tight when she gets to the middle back, but so tight in the upper back and the space “left” to count vertebrae up is so short that she feels they are compressed.

This could mean a lot of things and present itself in any number of ways, including a pinched nerve, or simply a need for some minor adjustments. Her rotator cuffs were tight and she could easily see how she was simply not extending her neck at all. She said her right side was significantly tighter. She had treated another baby with torticollis and her presentation left her with her head turned to one side and she couldn’t turn it to the other. She felt this could be the same thing but a different presentation forcing her neck forward. She noted hypertonicity, hypertonic flexion, and though perhaps her c5 was in need of help and that it could have been an issue with her brachial plexus.

When feeling her a few of her lower back areas had a release but it was slight and not intentional, just a relaxation or natural release, but she didn’t really want to try anything in her upper back, as she was agitated, fussy, and angry that she was feeling on her back, which could be a sign of extreme discomfort or pain, which should not be present if it was simply a tonal issue.

She also observed that her right frontal lobe was slightly more protruded and recommended that we might want to do some cranial sacral therapy. She recommended an x-ray so that one could see absolutely that there is no fusion or pinched nerve or other possible damage, and see exactly what was going on before doing any type of adjustment. She recommended a specialist in California who does work on babies almost exclusively, but she is in Fresno, which is over 200 miles away so she said she would ask both this specialist and another Chiropractor friend if they have other recommendations in the bay area or Sacramento.

The last thing she recommended was the work of John Strong who does something called brain entrainment. This is a type of Music Therapy I gathered from her description and he has done a lot of work with autistic children where he can find specific rhythms that will change mood and stabilize and relax an agitated or tight child. He has several generic CD’s but can also create customized CD’s specifically for your issues. Somehow the music, and the drumming, and the rhythm match with the various brain waves to help calm and change mood.

After all of this Holly was extremely cranky, but didn’t want to sleep. Janice and Jeff left for the Hotel and I rocked Holly and put her in the swing as we sat up and chatted and visited with Pat. Holly stayed up late and we were all tired but eventually I was able to lay down in bed with her and get her to fall asleep.

Holly wakes up early Sunday morning, around 7:30 and we hang out with Pat. My dad went to Einstein Bagels for breakfast, which was yummy. We called Janice to come over, but it took then till almost 9:30 to check out of the hotel, and holly was pretty sleepy by then. Janice wanted to look at her again in the morning, to see if everything was the same, if she was still as tight and still on the right side. She felt she was a bit looser, but still Right side dominate issues and not much difference. She had a little more extension, but not a lot. I put her down for a nap and we looked through her birth pictures. We saw how the Doctor was pulling on one arm holding tight pulling her out of my belly and how her neck was pretty squashed even the first day.

It was very difficult to find any pictures of her in the first 2 months where she was doing any real good neck extension, and at that age she would typically be floppy and need her head held, but at just a few weeks old she was fighting to get off her back trying to do crunches, which could indicate a discomfort, which made sense to the presentation Janice was seeing, and laying on her side.

I found a few pictures of her neck extended while asleep, which told her she doesn’t think any damage is severe like a fusion, but the extension was far and few between and by 6-8 weeks she was sitting supported and didn’t need to have her head held, she was holding it up herself already. Which in retrospect was a bad thing, because it was an indication of just how tight she was.

Holly woke around noon and this time she visited with Janice without her trying to feel her back, but it took a second for her to trust that she wouldn’t “mess” with her. And we took some more family pictures and then they took off.

I was exhausted and slept all afternoon with Holly during her afternoon nap. We woke up 6:45 and Bob called to see if I wanted to go to a movie with him and the kids at 7:10. Well I was famished so I talked him into a 8:00 PM Movie and had a quick dinner just finishing in time for him to pick me up. Kissing Holly goodbye and making sure my mom had all she needed to take care of her while I was gone.

We saw “Day the Earth Stood Still” which I did enjoy. It did seem incomplete, and the “earth standing still” doesn’t happen in the middle of the movie like the original with an explanation, but rather as a finale, so there are a lot of unanswered questions. But I enjoyed being at the movies, I saw like 6 really cool previews... OHHHH and I just remembered I saw a preview of a new Disney movie called “Race to Which Mountain” which is a remake of one of my favorite movies from when I was like 8 called “Escape to Witch Mountain” So I was very excited about that.

In retrospect, I didn’t see a wolverine preview, which I should have, maybe I missed it getting popcorn, but I don’t think so. While I love getting to see free movies when I go to the academy screenings, I do miss the fact that they don’t play previews, which is a trade off.

Holly had fallen asleep around 9:45 in the swing but when I got home she woke up and was ready to play, she didn’t want to go back to sleep, even after laying in bed, so I let her stay up, it was just after midnight before she would go to bed.