Chronicles of our 1p36 Deletion Angel - Sharing the life of our sweet baby sent to us directly from Heaven.
Thursday, July 10, 2008
Lily's Busy Summer
Lily with her brother and sisters and all of her cousins on Fourth of July!
Well, the pressure is on now with Jason's last post...I better get you all updated on our little Lily! Lily is now 14 months old (on July 14) We have had an amazing summer of achievements with her. The nutrition that Lily gets from her g-tube is really making a huge difference and we see changes in her everyday. In December when things got really bad and Lily stopped looking at us - it was like a light switch got turned off inside of her. Well - that light is definitely shining again and every smile and every laugh and every direct look at us warms us all over.
A few of Lily's accomplishments over the last couple of months include:
Gross and Fine Motor Development:
*Sitting for periods of time up to 10 minutes.
*Rolling, rolling and more rolling! Lily has figured out how to throw herself out of her sitting position and roll across the floor to get to what she wants. The problem with this is - Lily does not use her hands at all to stop herself from hitting her head. The therapists think she enjoys the stimulation that she gets when her head hits the floor. Ouch! I have read other places that many of the 1p36 kids have trouble with defensive reflexes.
*Assisted Standing. During PT our therapist has Lily stand against a bench. She does a very good job standing and does not fight it at all. For short periods of time she will stand unassisted - but leaning on the bench. Lily is also starting to put some weight on her feet in our laps on all the ground when you hold her up.
Her foot that turns out has been getting worse with the standing and so we will be getting some SMO's - small braces for her ankles that will fit inside her shoes. We actually got her measured for these today and our 5 year old daughter Ella helped pick out the design. Our state's early intervention program pays for one set of braces per year. This is a nice blessing as these are pretty pricey.
*Clapping - I started crying the day Lily clapped with me the first time. We were at a bbq at our friends house and Lily was laying on her back on a blanket in the shade. I was playing with her and clapping and saying "Yeah Lily!!" And then she just did it! I couldn't believe it. It was such a huge breakthrough for her to actually put her hands together and imitate what I was doing. Since that day Lily has started clapping and banging toys together. She doesn't do it every day and she doesn't always do it on command - but I don't care - she is doing it!! :)
*One afternoon in June I was able to get Lily to wave at me over and over again when saying "Bye Bye". She probably did it 10 times. Of course no one was home except me to witness it and I haven't really been able to get her to do it again.
*All Fours - We are struggling with the concept of all fours. Lily does not like to use her arms for anything. She especially does not like to put pressure on her hands. This last week while visiting my parents in Atlanta Lily started scooting forward using her legs. But she does not use her arms at all. The good news is that she is not arching as much to get places - she understands that she can get to her toys by moving forward. My homework for therapy this week is to try to work on getting her to use her arms more. We are supposed to hold things over her head so she has to reach for them and practice going in all fours.
*The ball. Lily loves bouncing on the exercise ball. It gives her a lot of stimulation that she enjoys. We can get her to do some things when on the ball that she will not do on the floor. She will use her arms and hands much better on the ball. I am absolutely terrible at holding her on that ball - it is so hard! I am telling you - the therapists have strong back muscles - I apparently do not! :)
*Lily is still on 24 calorie Neocate. We are feeding her about 28oz per day through her g-tube. In June we began increasing her feedings slowing from 4oz per feeding to 6oz per feeding. Our biggest accomplishment over the last couple of months is that we have given up her nighttime feedings! Because she is taking more and more during the day - we do not have to hook her up on the pump overnight. The majority of Lily's feedings are during the day while she is awake. Typically, we give her one more feeding at night after she goes to sleep and before we go to bed.
*Putting things in her mouth like pretzels and graham cracker sticks. In May Lily was really fighting us on the eating by mouth. She spit out everything I would try to put in. She got really good at it too - many times I would have rice cereal or squash sprayed on me! Lily's biggest issue seemed to be the spoon coming at her mouth. She would grab it from us and want to hold it herself. Our speech/feeding therapist recommended trying foods that Lily could hold and put in her mouth herself. Because we suspect Lily is allergic to dairy and possibly soy - it limits us to non-baby foods. All of the typical baby hand foods contain milk powder and soy in them- crazy. Anyway - I found some pretzels and graham cracker sticks at Whole Foods that contained no fillers. Lily loved them. She loves the salt on the pretzels and the sweet on the graham sticks! She is her mommy's daughter!
We also have tried avocado, sweet potatoes, pasta, mashed carrot and potatoes. Now when I say "try" we are talking like the smallest amount you can imagine. But I still count it as trying.
Our biggest breakthrough has been just this week. Lily got a virus 2 weeks ago - throwing up and diarrhea. She had no appetite for about a week. Luckily with the tube I could feed her plenty of pedialyte so she didn't get dehydrated. We had to work back up to our 24 cal very slowly. Lily wanted nothing to do with any type of food by mouth - so we took a big break. I started up again just late last week. I fixed her rice cereal with pears. Not only did Lily let me feed her half of the bowl I fixed - she was opening her mouth for more!! We typically feed her by mouth 1-2x per day. The first feeding always goes much better than the subsequent ones.
*Taking water from a sippy cup - We use The First Years disposable cups. Our Speech Therapist recommended them because they are very easy for the kids to get liquid out of and the spout is soft and therefore nice for a teething mouth. They work great. Lily cannot hold the cups herself - although she is starting to try. Lily still has not figured out how to hold things with two hands and bring them up to her face. She tries to do it with one hand.
Teething * Uggghhhh Teething! It is really unfortunate that kids get 20-something teeth. We are about to get our 8th tooth and it is not going very well. This summer Lily has started struggling with her skin again. We don't know if it can be attributed to the weather or teething. I swear each time a tooth is about ready to pop through her whole body breaks out in a rash. She gets diarrhea, diaper rash, doesn't sleep well and grinds her teeth. The grinding....it is like fingernails on a chalkboard. We try so hard to hand her something to put in her mouth each time she grinds. She actually has gotten better with this. I think the grinding peaked at tooth #6. I am sure there will be more teething stories to come - since we have 18 left to go.
G-Tube * In May we switched from a large g-tube to a mini-button. This was a procedure that took her several days to recover from. Of course the doctor said she wouldn't even need Tylenol - that it should not have been painful. Well- not for us. Poor Lily wouldn't get on her belly for almost 1 week. That mini-button only lasted about 3 weeks. The mini is a fairly new button and does not have market share whatsoever. The nurse practitioner at our office recommended it and we didn't know any better so we ordered what she told us to. When we went in for a check-up - the NP took out the button and it was black on the inside. She decided we needed to change the button right then and there. It ended up being a huge ordeal - we ended up having to go to the hospital and get a Mic-key button. Yes - the two buttons are mic-key and mini buttons...
Anyway - the Mic-key has been around for years and is doing fine. The extension tubes are much easier to use and leak much less than the mini. So- for anyone out there trying to decide which route to go - our vote is Mic-key! Shots
*The last round of shots Lily received was in December when she was 7 months old. This is when she stopped looking at us and she got so miserably sick- literally within two days of the shots. We are very very hesitant to give her any more shots at this point in time. In general we are all for vaccinations. Our other 3 children have had all of their shots. We know that there is all sorts of research saying that shots do not cause autism. What we don't know is how shots affect certain kids with 1p36 deletion syndrome. No one can answer this question for me. I know that a lot of the 1p36 kids have gotten their vaccinations. But it seems that every child who has this syndrome is unique. One child may be fine with them - another may not. Lily has such issues with her gastrointestinal system. Each time she gets a virus - her skin completely freaks out. I have great reservations about putting live viruses - such as the MMR into her. I am sure there will be more on this later...
Happy First Birthday Lily!!
*In May- Lily had her first birthday. We had a big birthday bash for her with over 70 people. Before the party we had sent out an email to everyone letting them know that we were starting a savings account for Lily that would help with things such as the Boston 1p36 conference or certain therapy components, etc. Well, we never expected the overwhelming response we got. We received $1000 dollars in gifts for our sweet girl. We were humbled and overcome with emotion at how generous everyone was. This gift will enable us to come to Boston to meet other 1p36 families. We can never thank our friends and family enough for these gifts! You guys rock!!
Lastly, I want to mention one of our neighbors who needs an enormous amount of prayer. On July 5 in the middle of the night our 41 year old neighbor Becky suffered a massive stroke. She is currently in the ICU. She is a very strong individual and she is trying to come back to her children - 7 and 4 years old. She cannot speak and is having trouble moving her right side. She has made great strides in the last week. But still has a difficult journey ahead of her. We have a very tight neighborhood and our neighbors are an extension of our family.
Thank you all for all of your continuing prayers. We definitely need them!