Success and a Heartbeat

We have had an overwhelming response to the Hope for Mattie Jewelry Collection. As of today we have sold 67 pieces of jewelry. Words can not begin to explain how thankful we are to everyone who has contributed-by either purchasing a piece of this collection, sharing it with friends or by making a donation directly to Mattie. We are truly blessed to have so many amazing people in our lives. We just can’t thank Dawn enough for all of her hard work. We have kept her extremely busy these past few weeks and we are forever grateful for her and her beautiful designs.

As you all know, we are using the money raised to help pay for Mattie’s therapies. Currently Mattie’s therapies consist of OT 1 x week, PT 1 x week, Craniosacral Therapy 2-4 x month and ABM1 x month (4 sessions). The monthly cost of all of these combined is $745 and that does not include her specialty doctors, our nanny (Mattie is not able to go to a “normal” daycare) and everyday costs of raising a baby.

With the money we have raised from the jewelry line and from donations, we have been able to add an additional 6 sessions of ABM this month and will be able to continue adding more sessions in the following months 🙂

I have tried a few times to explain to you what ABM is, but a fellow special needs mom (SNM) created an amazing website for parents called CP Daily Living. She posted an article called “Filling in the Pieces: The Anat Baniel Method & Cerebral Palsy”. I encourage everyone to go and read this. She explains it in a way that I never could. ABM is the basis of Mattie’s therapies and I truly believe in it. ABM offers us hope that one day Mattie will walk.

My Aunt and Uncle were in town this past week. It had been a month since they had seen Mattie (during this past month was when we started doing the additional ABM sessions. Mattie’s last session was this past Friday afternoon). Friday evening was when my Aunt and Uncle saw her and they could tell there was improvement! It is not always easy for us to see it since we are with her everyday, but it really hit home that someone who does not see her everyday is noticing.

Mattie seems to be more in tune with her body. She is more comfortable, not so tight, and is starting to move more freely. She is starting to play with more cognitive toys. She was actively participating in a ball popper game with Joba just last night. It was the first time that they have both played together. It was such an awesome moment.

Jim and I have been thinking about taking Mattie to see a “master” ABM practitioner. Many parents on the ABM message boards have made the trip to California to spend a week doing intensive ABM sessions with the master herself, Anat Baniel. All of the parents who have made the trip have raved about Anat’s abilities and the progress they have seen in their children. Could Anat Baniel give us some insight on what Mattie needs to focus on and what her core problems are? More on this to come….

I can tell Mattie wants to sit up. She moves her body like she is doing a plank sit up (not an easy thing to do) and tries to sit up but cant. If you think about going from lying down to sitting, that is not the easiest way to get up. Rolling sideways, propping your arm, and then pushing yourself up to sitting is what we are working on with her. It is just a matter of time before she makes the connections and is finally able to sit up on her own.

I came across a voice memo that I left myself from the night Mattie was born. I had completely forgotten about it. I recorded her heart beating. It had become such a part of my life all those weeks in the hospital that I knew I would miss hearing it once she was born. Check it out below, it is only 30 seconds 😉

2:19am – 3 hours before Mattie was Born

Play Time

Joba doing Craniosacral 😉

1 step back, 2 steps forward

We went and saw Mattie’s GI doctor on Monday. The news was not great. According to GI, Mattie only gained 1.5 pounds in 9 weeks. In fact, Mattie actually fell off the growth chart. This differs from our Pedi and my growth chart. For some reason our GI uses the CDC charts and the Pedi and I use the CDC-WHO charts. Regardless, Mattie is not gaining the weight she should be. Her height was also taken using more precise equipment then our Pedi’s office and her revised height puts her into the 20%. So begins the effort to fatten this kid up 😉
We are already doing a lot of what the GI wants us to do. Several weeks ago we started to make our own baby food. We are trying to get her eating lumpier textures but she still spits out and chokes if it is too lumpy. We are going to have our feeding/speech therapist do another evaluation on Mattie. The GI doctor mentioned doing a swallowing test, but I don’t think we are there yet. Mattie has gotten a little better eating since we moved her back into her feeding chair (we had moved her into a more traditional high chair for a month). The GI also wants us to put Carnation Breakfast in her milk (once she is weaned 100% onto whole milk). Ummmm… Gross. Now it has been a long time since I had this stuff, but looking at the ingredient list I am not convinced that I want Mattie drinking this stuff. 99% of Mattie’s food and dairy is organic. I did come across something similar to Carnation called PediaSmart Dairy that is Organic and Non-GMO!! Woohoo! I love it except for the fact that it is 247% (yes, I did the math) more expensive. We just can’t catch a break. [I will leave the organic/non-gmo debate for another post] Other GI requests are to use butter, whipping cream, and olive oil when making her food. Yum! We have been able to wean Mattie off of her Prevacid so she is now 100% medicine free.

This past weekend, we were able to fit in 3 sessions of ABM in Sarasota. We spent a lot of time planting her feet, integrating her legs, and rolling. On Sunday, Mattie and I were working on rolling left and she was able to do it once with no help! I was excited. Sarah told us that she rolled left twice today with no help! I really think she is on the verge mastering the left roll. She has started to use her legs to propel herself forward. It is amazing to watch her. She never realized that she could move up/forward. For example, when she sleeps, she is in the same exact spot we put her in. She is making progress and it is awesome!! We are heading up to Gainesville later this month for 4 sessions and hopefully get in another 2 sessions in Sarasota.

I can reach my toes with no problem!
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Thanks to Jim’s cousin, Greta, we have found an alternative solution to purchasing an expensive bath chair! We have been trying to use a bath chair that is meant for kids that sit up but Mattie hates it. She has no support and it is very uncomfortable for her.
So we bought the recommended Eurobath bathtub for under $30. For right now it is perfect. Finally, bath time is calm and relaxed again. Check it out:

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The Hope for Mattie Jewelry Collection has been a HUGE success. As of my last count a few days ago, we have sold 39 pieces and more orders are coming in daily. Jim and I want to thank everyone who has helped by donating money or purchasing a piece of Hope. We are so grateful! We are going to be able to start Aqua Therapy this month and add a few extra ABM sessions as well. So… THANK YOU! xoxoxo

Mattie sporting her new Hope For Mattie necklace!
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Mattie pretty much over this “photo shoot”
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Steady Progress

Mattie’s one year well visit was this week. Mattie is now 17 pounds 13 ounces! She is in the 75% percentile for height and 5% for weight. She is really tall but not very big. We went through her history since our last pedi appt and then through her development. Dr. B places her around 6 months old and around 4-5 months gross motor. We are going to go back in 6 weeks for a developmental and weight check up and a shot (we are on an alternative vaccine schedule).  I was not happy with her weight gain, but Dr. B thinks she is still making steady progress. He wants to see her in the 25% range by her 2nd birthday.

We go to Gainesville once a month for an alternative physical therapy called Anat Baniel Method or ABM. It is based on neuroplasticity, the brain’s ability to reorganize itself and gain new skills by forming new neural connections. With help, the brain can, and does, rewire itself.

It is hard in my own words to explain ABM so here’s an excerpt out of Anat’s book “Kids Beyond Limits,” you can download a free sample of her book here.

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