Saturday, July 18, 2009

Our Summer (So Far!)

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Addy has certainly had a fun, activity filled summer so far. She has the busiest schedule of any kid around! She attends five various therapy sessions a week and also attends Little Gym once a week, her weekends are filled with outings to various places. The summer is an exciting time for Addy (and us) since the risk of contracting RSV is much lower and we are not confined to the house.
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Addy’s visited downtown Chicago, Atlanta, Minneapolis, Madison, and Janesville. She enjoyed visiting her cousins and the aquarium in Atlanta, the Mall of American in Minneapolis and farmers market in Madison. She also had a playdate with one of her NICU friends, Zachary. We went to their house and played, had a delicious dinner, chatted and had yummy desserts. It was a lot of fun to catch up and see the kids – boy have they gotten BIG! We’ve been hanging out with Uncles Matthew and Kevin often and they both love Addy so very much. We’ve visited Grandpa Don and Grandma Jill several times and Grandpa Wally, Grandma Rose and Auntie Annie have been out by us to visit. We also went tubing down the Sugar river in Wisconsin with Auntie Britton, Melissa and her daughter Madelyne – it was so much fun! Until Addy puked on me, LOL! Addy visits Gran’s “house” often and loves to play and laugh with her. Addy still loves to spends her days with Auntie Shelly doing various therapies, art activities, playing, snuggling and taking long naps. Auntie Trish and cousin Benny have been out a couple times to visit and play too. She’s been on a bike ride, visited the park and been to the aquarium in Chicago. We also went to Grandma Nancy Taylor's house for Auntie (Nurse) Lindsay's birthday and the 4th of July parade. Addy is certainly getting to be a big girl!
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For the past couple months Addy’s reflux has had it’s ups and downs. Overall we’ve seen improvements after changing around her formula and medications, however, we think that she may have allergies that are contributing to her reflux. (Her latest formula is Elecare which is hypoallergenic and essentially the most basic formula they make.) Lately she’s also been waking up in the middle of the night with reflux, which is something that she hadn’t done in the past – and if you know Addy, you know that she LOVES her sleep. So, when she is up in the middle of the night she is not a happy camper.
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Thursday we had a long awaited visit with Dr. Bass, her GI doctor. He was actually happy with her progress as she’s gained almost one whole pound since he last saw her two months ago. (She’s 18.5 pounds now!) He said her coloring looks better too. He said that unfortunately she will continue to have reflux and vomiting until she gains more weight, with weight will come more muscle and as she develops abdomen muscles her reflux should start to decrease. He’s suggested we try to increase her feeds overnight by 50 cc which will bring her closer to 75% of the total caloric intake that is ideal for her weight. He confirmed that allergy symptoms have been really bad recently and suggested a couple prescription allergy medications but we will need to wait to see the allergist in September to get her thoughts. We tried to see if he could pull some strings to get us in earlier but sadly, no. We are so excited that the possibility of a GJ-Tube was not even mentioned at this time!
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We also had our annual Early Intervention (EI IFSP) review, we last met with her team about 6 months ago. Her case manager, speech/language therapist, occupational therapist, physical therapist and developmental therapist met with Mommy, Mama, Auntie Shelly and Granny Nan. We were very excited with the reports we received at her review!
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Physical Therapy:
Her physical therapy assessment was reported by her therapist, as improvements have been made, but her overall scores will appear low as a result of her inability to hold her head up and her lacking trunk strength. She told us not to focus on those results because she has made improvements, they just won’t be measured on that scale. She was pleased that her motivation has increased in the past 6 months. She did comment that she believes that her strengths lie in other areas. Some comments her therapist made are “challenges…with decreased strength and muscle tone through her head/neck, trunk and extremities… endurance with head control is significantly decreased, which impacts her ability to develop more age appropriate gross motor skills.” More positively, “…continues to demonstrate increasing social skills… trying to lift her head more frequently… smiles even more… generally less irritable during therapy sessions… somewhat more motivated to be upright and a part of what is going on in the room.”
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On a side note, we’ve started Addison in aquatic therapy. While at the hotel for the March for Babies we went swimming and noticed that she held her head up in the water for a longer period of time – we were so excited that we immediately started to research water therapy. We found a fantastic therapist at Centegra Healthbridge and she sees Addy in the water twice a week. Since Addy loves the water so much this is a more ‘exciting’ therapy for her because it is something she enjoys. I (Mama) go with her to all her sessions and have seen dramatic improvements since we began. Her therapist is very pleased with her progress and often makes very positive comments about her abilities. She will be reassessed on land in the middle of August so we are excited to see those results. The goal of aquatic therapy is to get her moving in an environment that she enjoys so that the skills will transfer onto land. We are hoping to see improvements in her EI (land) physical therapy as a result of these additional efforts.
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Occupational Therapy:
Addy’s therapist for occupational therapy shared with us an event that took place in her therapy earlier that day – she indicated that Addy scooted on her belly using her legs and feet (with her head and trunk on the floor) across the ground, with a rolled up yoga mat behind her feet for leverage, towards a set of toys. She apparently bumped softly into one of the toys with her head and started crying, not because she was hurt, but because she was stopped from her mission. They moved the toy and behind it was her very favorite toy, a pink and white bird house, she continued scooting to that toy and began to play with it immediately. Her therapist was so excited in her motivation and ability to move towards the toy. She did say that she can’t understand why Addy loves this darn toy – she has SO many others and she only seems to like playing with this one. We shared that she had a sound machine in the hospital that played birdies tweeting for six months. You could see the immediate understanding in the entire group of therapists at the table. Such exciting stuff!!!
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In her actual review for occupational therapy her therapist is very happy with her increased motivation. She is also thrilled with her new Wombat chair and the abilities that Addy demonstrates while in her chair with her Benik vest on for additional support. Some of her comments are… “has improved in the area of fine motor skills… demonstrating hands to mouth and hands to midline… will hold a crayon once positioned and briefly scribble on paper; she placed three blocks in a shallow bowl (this is a higher developmental level than above standardized score). She was able to pop out spring-loaded pegs from a base.”
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Speech Therapy:
Overall her speech assessment was the most exciting review as she placed age appropriate in one category, yes folks REAL AGE APPROPRIATE!!!!
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Her speech therapist was incredibly excited about her progress and shared that with us. I immediately started crying hearing about her accomplishments from her perspective in this area. She is really doing very well in speech and quite a smart little girl given the amount of brain damage she incurred as an infant.
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Addy’s language comprehension is most solid at 9-12 months with some scattered to 21 months! Her language expression is scattered at 6-9 months. Her feeding skills are noted atypical due to her G-Tube. Some of the comments from her speech therapist were… “…responds to music, attends to pictures, responds to sounds when they are not visible and reacts when her name is called… was able to look for familiar objects that were not in sight, visually scanned and looked directly at several named objects (15-18 month skill). In addition she was able to look at named objects from a group of five (jelly fish toy, book, spoon, [Auntie’s] hat, ziggy pasta) and looked at pictures when named (choice of two) in an unfamiliar book (18-21 month skills).”
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Her language expression skills are at or emerging at the 6-9 month age level. She coos, makes vowel sounds, babbles and can make occasional consonant sounds. She has made gains in this area. We’ve introduced signing but her motor skills make it difficult for her to sign. She can sign ‘more’ using more of a clap motion with her arms extended. Feeding skills are of significant emphasis in speech therapy for Addison. She has made good gains in this area and enjoys eating new tastes. She especially likes ice cream and other sweets! Addison smiles often and interacts with her smile and eyes.
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Developmental Therapy:
Addy sees a developmental therapist once a month, she observes her abilities and gives suggestions on various other ways to achieve each of her therapy goals. Developmental therapy has focused on motivation, play, interaction and exploration activities. This therapy focuses a lot on different ways to play and gain from the play. Her therapist was extremely impressed in the improvements she’s seen in Addy. She also commented on her increased motivation. She was very excited that we’ve taken the initiative to enroll her in various other activities. She believes the aquatic therapy will be a success and she is happy with her attending the Little Gym. She said that all opportunities to be in another environment and/or around other children are all very positive.
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At the time of her developmental assessment Addison had just received her Wombat chair and recently started aquatic therapy, when I re-read the assessment it is clear the improvements she’s made in a short time. Some of her therapists comments are… “Motivation has increased and is noteworthy throughout the day… interested in a variety of toys and shows favorites… moving in floor time by wiggling, reciprocal kicking and starting to roll to her side…her overall development continues to be dependant upon mobility, head control, motor planning skills and strength… uses eye gazes and facial expressions to interact with others… smiles in response to adult attention… seeking out attention…beginning to show affection or favorites, likes/dislikes and preferences.”
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There were several suggestions made in the meeting, such as getting on the list for an assessment at Easter Seals, potentially visiting a developmental toy lending library, taking pictures of Addy’s favorites and putting them in a book for her, possibly getting a stander (a stander is a sort of standing wheelchair that she can move around on her own in a standing position), and trying to find a device to assist with keeping her head up during eating and while in her car seat. They also encouraged us to continue with the aquatic therapy and Little Gym. The next day I remembered that we wanted to look into a shower/bath chair for Addy so I emailed our case manager and am awaiting her reply. Overall, continue doing what we’ve been doing and more!
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Also, based on the success Addison is seeing in her Wombat chair we are exploring getting her a pediatric wheelchair. Right now it is a challenge to find an in network provider (and wheelchairs are not covered through the Early Intervention program) so we are probably going to have to try and get an exception to go with an out of network company. Below is a picture of the chair and some information from the website – it will really be great for her compared to her stroller which really requires the rider to have trunk and head support.

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The Kimba Spring:
- Trigger-activated, one-step folding makes the Kimba easy to transport
- Adjustable front and rear-facing seat lets the child face the caregiver or interact fully with the environment
- Rugged tires prevent flats and missed appointments or school days while waiting for repair
- WC-19 Crash test compliant and bus-transportable
- Comes standard with black storage basket under seat
- Winner of the Red Dot award for Design Excellence
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It looks like a stroller - but it serves as one of the most child friendly, best designed pediatric wheelchairs on the market.
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Therapists can easily adjust the seating systems to optimally support and position a child as he or she grows and develops. Extensive support pad systems and numerous positioning accessories allow for the seat to be adjusted and positioned to meet each childs' needs. Shock-absorbing springs on the frame reduce the likelihood of tone fluctuations and the frame absorbs any jarring that could compromise the child's position. The frame is easily folded with the seating system to allow for quick and easy transport of the frame into a vehicle. The Kimba is WC-19 certified and is bus transportable. It's sleek design, caregiver friendly options and quality engineered components make it a favorite among families, caregivers and therapists alike.

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Best for those children unable to self-propel. Primary mobility device for a child requiring additional upper body support and mild seat contouring.

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Our fifth wedding anniversary is coming up at the end of the month. Wow how time flies! In December we will have been together 11 years!! It is amazing how our lives have changed, our goals have evolved and our passion has become our daughter and being the best parents we can be, all while still being so in love with each other. Our needs and wants have changed too, we don’t care as much about having a big house and lots of stuff or going on fancy trips to Vegas – although I still love my Coach and Vera bags! :o) Our time is planned around being with Addison as much as possible and helping her to experience new things. We very much enjoy planning for the March for Babies and we hope to once day have a non-profit of our own. I am writing two books and hope to be published in the future and eventually write a children’s book too. I have a business idea that I really think will eventually take off and our ultimate goal is to be able to sell the house in the next few years and move to a smaller apartment near a special needs school where I can stay at home full time with Addy, explore my business idea and write my books during nap times and probably work part time in a pharmacy close to home or find a part time work from home opportunity. We are planning our annual garage sale for sometime in August and looking forward to more summertime fun with each other and our girl!

8 comments:

Michelle said...

thanks for all the new news!

Claudia Romano said...

Great update glad to hear you guys are having such a great summer and Addy is getting to be such a big girl! Love all the new pictures what a little princess!

rosewallyoct1970@yahoo.com said...

Great job on the writing Momma I love how you incorporated the photo's. Love you all soooooo much!
Grama Rose

Ronda said...

Sounds like Addy is making great progress. She is a hard worker! Seems like you are all having a great summer. Enjoy! Love, Ronda

annie c. said...

What great pictures! I just love reading updates on Addy! tell Addy to keep up the great work.

RosaPatano said...

I so admire the strength and love you have for each other and for your beautiful daughter. I know you don't know me, but I have been following the life of your little daughter since her birth through a friend who also has a special needs son. I would love to meet your beautiful amazing family. When is your garage sale. (rosapatano@comcast.net) I am in awe of the strong bond you hold for each other and the love you have for your little girl. Rosa Patano.

Mabel said...

Dear friends,
Im Mabel and I have met your blog through internet, I'm from Chile and I have a baby with a cerebral palsy and I also have a blog if you want to join us it'll be great...
We are doing ABR therapy from Canada but here in Chile, Florencia ( my daughter ) has had a great evolution with this therapy, it is amazing...
your child is very nice, pretty, really marvellous, she is very kind and happy... congratulations.
have a great new year...
best regards,
Mabel

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