Sunday, August 13, 2006

 

Update from Mommy


Hi everybody. It has been a while since I have last posted on the blog, so I thought I would take advantage of Sophia's naptime and update everyone on her therapy sessions. One of the main reasons I choose to be stay at home mamma is so that I can manage and be involved with our daughters on-going weekly therapy sessions. Sophia's therapy program is funded by the state of Missouri. It is called First Steps. It is a totally free for us. It provides therapy/therapists to children who have all sorts of health issues and deals particularly with developmental delays. Through First Steps, therapists come to our home to work with Sophia as often as assessments and evaluations qualify them to do so. Briefly, I am going to attempt to explain the therapies Sophia receives weekly and then I am going to give an update on her progress. I will refer to each of these therapists by their first name.

1. Sophia sees an occupational therapist (Sheri) for one one-hour session per week.
2. Sophia sees a feeding specialist and speech-language pathologist (Suzanne) two one-hour sessions per week.
3. Sophia sees a dietitian (Dana M) once every other week for 30 minutes.
4. Sophia sees two different physical therapists (Dana S) for one half-hour session per week and (Barbara) for two one-hour sessions per week.
5. Sophia sees a Special instructor (Trish) once every other week for one hour.

As you can imagine, it's a major undertaking keeping up with all of these therapies. Sophia's therapists have standing appointments but things always seem to change. Either our daughter has doctor's appointments or a therapist has scheduling conflicts needs to reschedule. Needless to say, planning requires writing down all these appointments on our calendar in the kitchen. She has at a least one therapy session a day with the weekends off.
As the therapists work with Sophia, it is my job to encourage her, wipe her nose and learn how to do what ever it is that the therapist is teaching her to do so that Michael and I can continue this therapy through out the week. At first I was a bit overwhelmed, but now it just is a normal part of our lives. Sophia really likes all of her therapists and enjoys when there are other supporters in the room like friends and family to encourage her. Some of her therapists occasionally schedule a session in the evening so Michael can be more involved.

Occupational therapy is by far Sophia's favorite and it where she does her best. Sophia is not as delayed in her fine motor skills as she is in her gross motor skills. My best guess according to her last assessment is she is about 4 months behind with her fine motor skills. Sheri and Sophia are always working on sensory issues. For example, she dislikes hair washing and teeth brushing. Sheri is always introducing different kinds of play and new textures and shapes. One example is, filling a large bowl of dried lentils and putting small toys inside the bowl and having her "go hunting" for the toys. We are working on sign language with books and objects and eating with a fork. Sheri likes to use crafts as a way to teach Sophia new things. Sophia works on puzzles, and she does sorting and stacking, among a myriad of other fine motor activities.

Physical therapy is just plain hard work for Sophia. She is very delayed in this area. She is unable to stand on her own, and has not started crawling yet. Sophia is performing at or around a nine-month old level. The main goals for PT right now are standing, bearing weight on her feet and legs and putting Sophia in the hands and knees position. She HATES being in the hands and knees position. Having two different therapists has been such a huge benefit for us. Barbara works with Sophia on the standing and Dana mostly works on the hands and knees. Sophia was recently fitted for a piece of medical equipment called a gait trainer that she should be receiving in a couple of months. She has one on loan right now from Barb. It basically stands her up in a walking position and all she has to do is put her feet down and take steps. She likes it.

Sophia has a dietitian come by weekly to monitor her height, weight and head circumference. She also helps me manage her water intake and feeding schedule. Dana is Sophia's Buddy. She looks forward to her playing with her and feeding her. Sophia has done very well in this area there has not been any significant weight and growth issues despite her heart condition. She maintains around the 50th percentile for both height and weight.

Sophia works with Suzanne, the feeding specialist, twice weekly to improve her speech and eating skills. Sophia eats like a champ. She can not drink any liquids by mouth and still gets her fluids and medications through her g-tube(I'm sure you've seen it in her pictures). Sophia's speech is very delayed. I would say she is at or about one-year with her speech development. Suzanne encourages the development of Sophia's speech and language. This therapy helps us teach Sophia the most effective way to use language to express herself.

Lastly, she meets with Trish, the special instructor. She ties all these therapies together and monitors Sophia for cognitive delays. She suggests age appropriate play activities for Sophia. She recommends certain toys and also tells us when Sophia has out-grown toys. It is our opinion and seems to be confirmed by many professionals who have seen her that her developmental delays are not significantly rooted in cognitive problems. Sophia is very smart.

The therapies Sophia receives make a significant difference in our ability to deal with Sophia's development. I would like to thank all of her therapists for their caring and expertise. They are all special people.

I hope everyone has found this update informative. I would be happy to answer any questions or further elaborate, just leave a comment or email us.

Patty
Comments:
I have a dear friend who has a little girl who has the same developmental issues, and her fleet of therapists are wonderful too. I do understand how the schedule can get hectic, but she loves them all, and they're just all-around good people.

I'm always amazed by how children adapt to this constant work, and work so hard and keep on smiling. I know, it's "normal" to them, but it makes me appreciate how amazing kids are, how adaptive and maleable.

So, good to hear from Mom for a change, and of course, glad to hear that Sophia is doing well. She's so sweet and happy and utterly adorable!
 
So great to hear from you Patty! I thoroughly enjoyed reading all about Sophia's ongoing help. It amazes me the treatment that's available out there. Glad Sophia enjoys everone working with her. She definitely has two adoring and wonderful parents!:)

Christine
mom to Joseph (TGA baby)
 
Wow, your weekly schedule certainly is full! Thanks so much for sharing all of that information.

How great that you have all of those therapists available for Sophia to work with. Sounds like she's a very hard worker ... and pretty darn cute too :)!
 
That is such a full schedule and I can only imagine the effort it takes to keep it all straight! Glad to hear from Sophia's Mommy!
 
WOW!!! What a schedule you have Patti!!! You are so very knowledgeable and I know that this is why Sophia is doing so very well. You are certainly a blessing in every way!!! I think even with a calendar I would mess the schedule up!! You and your family are in my thoughts and prayers!

Love Nanna Holley
 
You girls are busy, busy, busy!! It is so awesome that Sophia receives all of these services free of charge. We use First Steps in KY, and while it isn't free, it is significantly less than if we were trying to get therapies on our own. I am sure that the therapists are in for some major breakthroughs now that Sophia is feeling so much better!!!
 
Busy busy! :) It's so great that you are available to her and to the therapists, what a difference it makes! I enjoyed all the information, and it is so exciting to read about all the progress she is making. :)
 
I have seen Patty manage this schedule for a long time and she makes it look easy, but I know it is not.
I have told Patty before what a wonderful Mommy she is and I must repeat the compliment over and over, Sophia's progress is guided by the therapists but the day to day refresher courses are performed by Mom and Dad that is why Sophia tries so hard and wants to please everyone.
Patty told me a new therapist came last week and worked Sophia really hard, when he said she was a good girl she offered him one of her special kisses, what a compliment.
I have seen giant strides in Sophia's development and this is only the beginning of more and more abilities.
Sorry to run on so long I just love this little family so much
 
Isn't it amazing what our kids go through and still find their smile? That is a heckuva schedule but totally worth it, I am sure. What a blessing it is for Sophia that you are able to stay home with her.
 
Patty, thank you for all the wonderful compliments, but like I tell you over and over, its the work that you and Michael do for her every day that really makes the difference. She has come so far, and she is one of those kiddos that reminds me why I love my job so much. It has been such a pleasure working with your family and getting to know you all. I will miss you!

Dana
 
As one of the therapists Patty is speaking of, I'd like to say Sophia is one lucky girl to have a Mom who has sacrificed a lot to stay home and manage not only her therapy schedule, but endless doctor visits and phone calls, not to mention social activities that are so important in the life of any child. The list goes on and on. Patty hates to have to miss therapy and she is the parent every therapist wants to go the extra mile for, because she is so flexible and yet still a great advocate for Sophia. Michael and Patty both work hard applying what they learn in therapy, and it shows every time I see Sophia.
 
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