31 for 21: Vada's Team; Therapists and Friends-Pt.1

You have been introduced to "Team Vada", now let me introduce you to Vada's Team.

Yesterday was Vada's 6 month therapy review. Every six months we meet here in our home with all of Vada's therapist and we go over her progress, possible set backs, future goals and we set our new six month plan into action.

When you have a child who has Down syndrome or any form of special needs it is important to provide that child with every learning opportunity possible in order for them to successfully reach milestones and goals. To ensure this you MUST be willing to work with professionals in the areas where your child may need a little extra support and guidance.

Kim (second lady on the left), Vada's Physical Therapist (PT) has been working with Vada almost from the moment we brought Vada home. It may sound sad but besides Vada's sisters, Kim was Vada's first "friend". I however, do look at this as a sad thing. I am grateful that Kim is the kind and caring person that she is. Vada likes her and the two work well together and get a lot accomplished during their sessions.

The importance of Physical Therapy with infants and children who have Down syndrome is to help the child to learn to move his or hers body approprately. Children born with Down syndrome typically have some form of Hypotonia also known as low muscle tone.  With out Physical Therapy many children with Hypotonia will adjust their movements to compensate for their low muscle tone, which can also lead to the child walking in a way that is not postually correct. Therefore, it is of the utmost importance to have a Physical Therapist who is trained, experienced and knowledgeable in the distinct musculoskeletal differences of a child who has Down syndrome and of a child who does not.

Vada's second therapist, Sara (second lady from the right), is Vada's Feeding and Speech Therapist. Children who have Down syndrome may have smaller mouths making less room in their mouths for their tongue, in combinations with hypotonia a child may have different set backs and struggles when it comes to feeding and speech. Since eating and communication are an important part of everyone's daily lives it is important to work on different skills to make feeding and speaking easier.

When it comes to Speech therapy, people don't only communicate through speaking but also through facial expressions, gestures and sign language. Typically, all infants with and without Down syndrome learn to use one of the alternative methods before speaking. However, when is comes to children who have Down syndrome (typically) they tend to learn to be receptive much quicker than they learn to be expressive. Meaning a child or infant with Down syndrome will learn what you are saying and understand the meaning before they are able to communicate their own wants and needs.

Vada has a few words that she uses verbally but she has learned to do a couple of signs and  gestures, like turning her head away when she doesn't want something. Her receptive skills are amazing, she really seems to understand most of what I am telling her. As of recently I have noticed her getting more frustrated when she is trying to communicate with me. Therefore, I have decided to really focus on signing more. I am hoping to help her learn more signs quicker, so that she can communicate with us easier than she is now.

If you have a child with Down syndrome, more than likely he or she will need some form of speech therapy and that's okay. Its important to get the evaluation early on and to start the therapy as soon as recommended . Speech therapy for individuals with Down syndrome is a bit different than speech therapy for other reasons. For this reason, again, you need to make sure that the therapist you choose is knowledgeable  in "normal" or "typical" speech development patterns as well as speech development that happens in people who have Down syndrome.

On a side note, gross and fine motor skills are the first steps to developing good speech patterns as well as learning vocal language. It is important to have these forms of therapy going in conjunction with the speech therapy.

Feeding difficulties in individuals with Down syndrome may be caused by a number of reasons combined or one specific reason. Some individuals have sensory sensitivity issues, the motor skills may be delayed, there may be other medical issues that are causing the child to have set backs or the physical structure of the mouth may create some difficulties as well.

When I was pregnant I was told that Vada probably wouldn't be able to breastfeed. The doctors just assumed that she would have such poor muscle tone that she would be unable to figure it out. That theory in combination with her weak heart would make it next to impossible for her thrive. I didn't know much about Down syndrome at this point in my pregnancy but even at that moment I thought that they were full of poo! I was appalled that they hadn't even met my daughter and yet they had already wrote her capabilities off. It was complete nonsense to me.

When Vada was born, before she ever had heart surgery as soon as she was able to have "food",  I attempted to nurse her and she latched right on! I breastfed Vada until she was seventeen months old and she nursed like a champ! Maybe its true that not all babies who have Down syndrome will be able to breastfeed but you never know what your child is capable of unless try.

For Vada eating solid foods was an issue mainly because she only wanted to be breastfed. She had all of the skills that she needed to be a good solid food eater, only she wouldn't swallow her food. When I had my tonsillectomy, about two months ago, she had to go without being breastfed and since she would not take a bottle (never really would) she was kind of pushed into eating solid foods. Although she didn't need too much persuasion.

Tomorrow I will share a little about Occupational and developmental therapy. :)

Sound Asleep

Vada may look a little tired but don't let her looks deceive you. She's recovering and she is most definitely gaining strength each and every day that passes.

This morning she woke up early and ready to play. I however, was not...ready to play or fully awake.

I am so, so, so tired. I didn't sleep well at the hospital and prior to that I hadn't had a full nights sleep in ten months. No joke or exaggeration, it's been that long! Now, it's like I cant catch up. Someday. Someday she will sleep through the night and then, so will I.

Anyway, that's all besides the point.

This morning Vada ate real food! I give her all kinds of different foods to try. I know some of the things that she prefers to chew on and I throw them into the mix but I don't let them become all that she experiences. Today, I made her something new. I made Malt O Meal, the chocolate kind. I left out the added sugar and salt and otherwise made it as directed, nothing added, nothing special. She took about ten bites... and swallowed! I couldn't believe it. The texture is so odd, I would have never imagined that she would like it, but I was wrong, she did!

Then, tonight, before dinner, she was so tired and kept nodding off. It was so sweet, but I knew that I had to keep her up a little while longer. Otherwise, I would be up all night with a little one who would think it was time to play. I quickly heated up some left overs from last nights dinner. It was rice with broccoli and cheese. She liked that too! She took several bites, packed quite a lot of it in her cheeks but I would be willing to bet that at least half of what she took, she swallowed. This is huge! I could tell she was finished when she spit out everything that was in her mouth out. That too is a good thing. No chipmunk cheeks full of unwanted food. Nope, she know what to do with it all, one way or the other.

Now, she is in her bed. Where she should be. Sleeping soundly and hopefully having sweet baby dreams and that's my cue, my bed time call. Good night everyone!

Our Week

The Wilson household has been busy household over the last week and I have been choosing sleep over extra activities that I normally would be doing once the girls were in bed, such as blogging. So, I thought I would give a quick update on our fun but not overly interesting week.

Finally my sister, her son, Vada and I were able to get together again! It has been over seven months! This was not just the highlight of my day or week, this was one of the greatest highlights of my 2011 year, so far! I have missed her and my little nephew so much.


Vada had her first taste of a smoothie. She seemed to like it, but not enough to try it again. I cant seem to catch her interest in any specific food other than breast milk! We are having a speech therapist come in next week to watch her while I attempt to feed her. Afterward, we will figure out what needs to be done, if anything to help Vada with eating and her mouth control.

I have been working on some major "spring cleaning" this week and throughout the last month. I have cleansed our house of so much clutter already and there is more to go soon. I am hoping that with in the next two weeks I will be completely finished including with my scrap room. Then I can catch up on some scrapbooking. I have two years of photos to do and then some!

Justin tore a wall down in the basement for me and he recently finished another end table that he built. This one is for our house, it's made out of cherry and it is beautiful. He wants to start building furniture and selling it. Maybe have his own business sometime in the future. He's great at whatever he does and I know that he would create a wonderful business for himself, if that's what he chooses to do.

Sometime this weekend my elliptical is coming in and I cant wait! I have missed exercising so much but I have also lacked in the motivation area. I'm ready to get back in to a routine!

I was in a fender bender last Sunday at church and I am still unsure who's fault it actually was. I believe that we were both at fault because we were both in reverse. Either way, its hard to tell so Justin and I took the dive and wrote a check for the damage as to not involve our insurance and in the long run save us money. I was the one driving, Justin was at home asleep from working a night shift. I felt horrible waking him up to tell him about it. Luckily, my husband is very understanding.

Vada and I took another trip to Peoria, this time to meet with her Endocrinologist, for her Thyroid.


Awhile back I wrote about her having Hypothyroidism and this was just a follow up appointment. Everything went well, we are just waiting on her lab results. There may be some minor medication adjustments but nothing overly drastic. She measured the same as before, around 25 inches and now weighs 18 pounds- 8 ounces. Her weight is fluctuating due to her loosing the weight that she gained while on ACTH and having Cushings.

The girls and I went to church this Wednesday for a special Ash Wednesday service. We sat in a pew filled with and surrounded by church members and it felt great! Actually, Vada was held by a wonderful lady who not only works with the youth she is also in the Sunday class that I will be rejoining eventually. It was odd not having her in my arms like I normally do, but Kiliegh quickly replaced that void by lying her head in my lap an pleading with her hazel eyes for me to play with her hair.

Two more things that I am excited about are everyday things to most people, but almost a rare delicacy in our family..., were having company over! Yep, this Saturday Were having one of Justin's friends and his family over for lunch. I'm excited and overwhelmed..., its been so long since we've had anyone other than family over. I cant wait for the interaction and the commotion of the extra children. It'll be fun.

Then, this Monday I set up a luncheon with one of my closest friends and her two little one's. Her and I have grown apart somewhat over these last few months, which is to be expected. We weren't allowed to have Vada around others and she has recently had her second child, so she has been very occupied as well. Needless to say, I am excited to catch back up on our friendship and on all of the things that I have missed over the past year or so.

Things are beginning to really balance out. The sun is shinning more and for longer periods of time. The girls are all thriving and for the most part, getting a long. I have been keeping busy and enjoying all of life's little pleasures. My husband has been successful with his carpentry so far and has some small jobs lined up. Its been a good week and I look forward to the days ahead not with fear but with high hopes and on the brighter side of the spectrum.