Tuesday, December 30, 2008

Hi, I'm Melissa

Hi, my name is Melissa. I have been following this blog for about 6 weeks, and finally decided that I need to share my story here. I have been looking for a place that I can share the things that nobody else understands, and I have found it!

My story hopefully isn't too long. I have three wonderful boys, two of which have special needs. My oldest son, Trevor is 6 and had autism. He has grown leaps and bounds thanks to some wonderful therapists and teachers. He was evaluated and began speech therapy at 18 months. So the life of therapy, doctors and such are pretty much all we know. He is currently in 1st grade in a special Language Enhanced Program. He does have more struggles this year than he has before, but he is a special little boy.

Our next child, Jordan is 4 and a very typical boy. He does have lot's of energy and keeps us on our toes, but he is a ray of sunshine some days. He is very smart and is in the stage of asking LOTS of questions about everything. In many ways he is like our oldest child, because we have had all the typical development stages with him that we have never had with Trevor. He is a wonderful brother and most of the time patient with his brothers.

Now on to our youngest. His name is Josh and he is 19 months. He has several problems, some of which have been diagnosed and some not. He was born 5 1/2 weeks early with his lungs not being developed. He was in the NICU for 10 days, with jaundice and poor feeding problems. We brought him home and have struggled since then with eating. We had to buy numerous bottles to find one he could suck from. His suck was always horrible, you could hear him all over the house. When he hit about 6 months we tried him on rice cereal in which he threw up or gagged on everything. He was not putting any weight on his legs, so our ped. suggested an eval with Early Intervention. He qualified for both Physical and Occupational therapy. We thought it was just going to be a temporary thing, but here we are almost 13 months later with no end in sight. His feeding problems continue to be huge stress on us. He is only eating pureed foods, with no lumpy textures at all. He has been losing weight, and we started him on a special formula we can only get online and so far it has done a little bit of good, but as of his last GI appt, not enough. He has been into the GI doctor for reflux and digestion issues, and is being medicated for both. His OT has been working tirelessly with him for a long time and we have made small progress, but not as much as we hoped. He is going down in January for a swallow study at Primary Children's Medical Center and then we have our first appt with the feeding disorder clinic in February. He also has been recently diagnosed with Sensory Integration Disorder and we finally have a reason behind all his balance problems and motor delays. He finally walked at 16 months after we got a Reverse Pediatric Walker for him to use. Since then he has started to tippytoe walk with his feet pointed too far out. So we just got him some Dafo Braces yesterday to help with that. He is still very unsteady on his feet and falls alot, but we are so happy he is walking. He wears a weighted vest to give him that sensory input and it has also helped. He is not climbing or attempting things like that. Normally once a child is walking the Physical Therapist releases them, but in Josh's case (we have an amazing therapist) she feels he still needs more help with the gross motor and is going to work with him on climbing and more balance. He also has added speech therapy to the list as well. His language is very behind at a 8 month level (he just had his E-Lap testing), but we have a good speech therapist now too. It's alot to keep up with for such a small boy, but he has an amazing personality and puts up with alot. He is such a trooper!

I am so glad to have found a place that I can get some support with the daily struggles that I go through. I am so excited to see mom's with autistic kids here too! I have two kids with different challenges and it seems like you all understand it all! I can't wait to get to know each of you and pick your brain maybe at some point! It is amazing how much help someone can be that understands what you go through! Thank you for letting me be a part of your blog!


Lori said...

Hey Melissa. :) I'm glad you came over! I knew about Josh but didn't realize Trevor was autistic. Isn't Lisa an amazing therapist? I love her. I'm glad she's sticking with you guys longer. Our last PT stayed with Jaylee until she could jump, which was right before she turned 3. Hopefully Lisa can pull it out that long for you too.

Welcome, welcome!!

Jessica said...

Hi Melissa it sounds like you have your hands full! My hat is off to you. I am excited to talk with you about your boy Josh. I have some of the same concerns with my little guy. I am glad you joined this blog!

Nancy Brown said...

Welcome!! Glad you found us. I am looking forward to your insight!

Happy in Holland said...

Welcome Melissa! I'm so glad to have you here. My son has autism, so maybe when can help each other out a bit. I can't wait to learn more about you and your boys.

Anita Nap said...

Wow. You definitely have some struggles there but I can tell you are an amazing Mom.

Boy am I familiar with the feeding issues. Ugh! Marshall at least eats sometimes now (he's 4).

One thing I've found is that the therapists at Primary Children's Medical Center are NOT ALWAYS the best. Maybe it's just because my kids are not severe or easily diagnosed. I found a wonderful feeding therapist in Sandy. We've got an appt. on Thurs. and I can't wait to go. Today Marshall actually ate some scrambled eggs for breakfast. We'll see what lunch will bring. He hates food.

Katie said...

Melissa! Hey great to see you here! It's funny, I always look out for the faces on this blog that are becoming so familiar and today I got on and I said, "Whoo-hoo! I know her!" Play group. We are the Josh parents. I am so glad you found us. I hope you like it as much as I do.

Mel said...

Hi! I know of the struggles with feeding. I am always looking for new ideas. I look forward to getting to know you better and bouncing ideas off each other.

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Chair For Cerebral Palsy Child

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Recliner Wheelchair Sale

Keep Posting:)