Sunday, March 16, 2014
PT, Rolling
Katie is very good at rolling belly to back, the easier way. Next we needed to work on back to belly. I told her Physical Therapist that I thought she wanted to roll but her arm was getting stuck. I would try to help by moving her arm and Katie would get angry. The PT teacher said that getting stuck is very common and all I have to do is lift up a tiny bit on her head and Katie flipped right over!
We practiced the roll a few times over the next two days. Then this morning I found Katie in her bed on her belly! She is now rolling both ways! I didn’t get a picture because her arm was stuck in the slat and she was angry.
Here are some pictures of what was happening and how I was taught to help her.
Left arm stuck in the roll.
Terrible picture, but here I am just slightly lifting her head up off the ground.
Roll complete!
Itchy tags
Ellee is very much like her daddy and I often wonder if she inherited anything from me. Well, Ellee has started asking me to cut the tags out of all her clothes because they are annoying and rub on her neck.
She IS mine!!
I’m not sure why of all things she had to inherit that particular quark but it makes me smile every time!
American Sign Language (ASL) adventures
Through my reading about Down syndrome I have learned that many children have delayed speech, sometimes for many years. All the things I have read recommend using sign language with the spoken word, so the baby can learn to communicate before they are physically able to speak.
Children with Down syndrome often have delayed speech for two reasons. They can have hearing loss from chronic ear infections because their ear canals are tiny and prone to infection. Many children also have low muscle tone and tongue coordination issues which reduce the ability to speak clearly at a young age.
These facts paired with my respect of sign language and the sign language community has convinced me to start learning sign language. Ellee is learning it too!
When Ellee was a baby we dabbled in ‘Baby Signs’ which is a modified version of sign language. Ellee used a few signs such as more, please, milk, etc. I did get annoyed with the baby sign program because they modified many of the signs rather than using the true American Sign Language signs, even if babies would be physically capable of making the true sign.
So, to start our journey, Ellee and I started watching ‘Signing Time’ on Netflix. They teach signs around a theme, such as sports, weather, etc. Then they put the signs to a song to reinforce. Ellee loves it and we have learned quite a few signs. Sometimes she will start signing randomly, ‘tree’ and ‘flower’ are her favorites. Very cute. She also uses the signs when she hears them in conversations or asks what the sign is if she forgets.
Then of course, Ellee starts asking about signs that were not included in the video. One video taught us the sign for ‘sun’ and Ellee needed to know the sign for ‘moon’. At that point I decided I needed a sign language dictionary. I searched on amazon and received 9K results!
Luckily, I have a friend from high school that is a teacher for the deaf. I asked her advice and learned even more. American Sign Language (ASL) is a language of its own with its own grammar rules separate from English. Alternatively, you can learn to use the ASL signs to English grammar, which is not learning American Sign Language but is merely utilizing the signs. We both agreed that since Katie will eventually learn to speak, and can hear, it made the most sense for us to use the ASL signs with English grammar. She recommended the Random House Webster’s, American Sign Language Dictionary. She preferred this dictionary as having the best pictures and descriptions of how to perform the signs.
Our dictionary showed up yesterday, now Ellee knows the signs for ‘moon’, ‘heart’, ‘mommy’ and ‘daddy’ and all is right in her world.
I am really enjoying learning the ASL signs but I am not sure that Katie will even need it. All indications for her language development are looking great. She passed her hearing test and has not had any infections. She is already cooing, babbling, blowing raspberries, and making a few vowel (ahhh, ohhh) sounds. She eats like a champ which is apparently HUGE. The muscle strength, tongue and breathing coordination required to breastfeed are often very troublesome for children with DS. The muscles needed for feeding are the same ones used for speaking. Katie rests with her tongue in her mouth which will help develop the palate in her mouth properly. She also holds babbling conversations with me. She speaks, I repeat, back and forth very constantly and regularly. Whether she ends up using sign language for a few months or years, I still want to keep it up since Ellee and I are having so much fun.
Here are the signs we know so far: most of the alphabet, 1-10, hello, what, outside, tree, leaf, flower, spring, cold, hot, sweater, rain, snow, sun, moon, football, basketball, soccer/kick, baseball, dance, run, nice, name, meet, different, same, share, time, know, learn, heart, mom, dad, old, new, read, book, play, today.
Life on paper
I think we did amazingly well handling Katie’s heart surgery. However, I had a good long cry when I received the itemized bill from the surgery. It wasn’t the amount; our insurance is great and the amount we have to pay is fine (I am thinking it will be about $5K once all the bills come through). What really got me crying was seeing each item, its amount, and essentially seeing a price tag on my baby’s life. They saved her life and it cost about $90K which seems like a lot but I would pay every penny if necessary. I am so thankful they could save her for such a small percentage of ‘priceless’.
Here are some of the big ticket items:
- $27K for the surgeon
- $9.5K closure of multiple ventricu…(rest was cut off)
- $7.4K repair heart septum defect
- $9.8K revision of pulmonary valve
- $4K for the anesthesiology
- $1K for each ICU doctor visit
- $20K for ICU services and room
- $9K for lab chemistry
- $9K for OR services
Ellee Triumphs
I noticed the other day that Ellee has grown up a lot in the last few months. She is a wonderful big sister, but she has also matured in her developmental skills too.
Ellee received a set of pattern blocks for Christmas. The blocks come with 50 different patterns you can use. She has watched me play with them a few times but has never shown much interest. The other day she brought them out and asked me to help her. I showed her the different sizes, colors, diagonals and we did one to together. Then, she did one solo. The only help I gave was holding the ones she had placed in place so they didn’t slide around on her. She did everything else, looking at the pattern, picking the blocks, placing them…awesome.
I decided it was time for her to learn how to pour liquids. I gave her a large plastic pitcher and three different sizes of plastic cups. She has had a grand time learning to pour and she is pretty good at it. I also taught her she can see the water level line through the pitcher…I didn’t realize that needed to be pointed out!
Ellee has never been much of a colorer and I have tried hard, perhaps too hard to get her to like it. She would much rather draw but her drawings were always random lines and squiggles that didn’t make much sense to me. Then she brought home her first self portrait from preschool, complete with teeth and blue eyes!
Ellee loves building forts. Sometimes she calls them forts, sometimes tents, and sometimes nests. I think she is using all the words interchangeably but usually nests involve sitting in laundry baskets. Previously her forts involved hiding under a blanket in a random pile of pillows. But the other day I looked up and she had created something incredible. She used a sleeping bag base, used Katie’s kick toy as a stand, and piled the pillows and blankets around the support. Then she added her toys and ice cream. I thought it was amazing!
The sleeping caterpillar
Ellee found a cute fuzzy caterpillar in late Fall under the stairs of our apartment building. She said hi to it and went about her day. The next day she saw it again and said it must be sleeping, since it had not moved. Now, five or so months later, she says “HI” to the sleepy caterpillar almost every time we leave or return home. I guess with the cold weather it is temporarily preserved?
I am all in favor of teaching children about life and death or the circle of life with small creatures in preparation for any future (hopefully VERY far in the future) event with someone she loves. However, for some reason I cannot bring myself to discuss the truth about the ‘sleeping caterpillar’. Maybe it is because we are always in a rush to leave or it is cold outside and we need to get in quick. Most of the time I forget about it, but she never does.
Now I need to decide if the ‘sleepy caterpillar’ should disappear or if we need to have a burial. I don’t want to make a huge deal out of it but I don’t want to lose the teaching moment either.
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