Tuesday, March 23, 2010

Dr. Gooch

It has been suggested to us that we see about getting into Dr. Gooch at PCMC for some
spasticity treatment. From what I know so far it is using a form Botox to relax muscle. Do any of you know anything about this or Dr. Gooch?
I am a bit nervous to go down this road with Bree because I am not sure what the long term effects are. But we really need to try something because she is has kinda taken a few steps backward due to her growing and her muscles not keeping up with the bones. She is in constant pain and we are at a loss. Any thoughts?

Tuesday, March 16, 2010

A different kind of question

I have a dentist appointment next month and it got me thinking about taking Tanner to the dentist. We haven't taken him yet and I'm worried about it. He has a lot of sensory issues when we have to do most "grooming" things to him, like cutting his hair, clipping his nails, and brushing his hair. Brushing his teeth causes a daily conflict and cutting his hair is a huge ordeal. He freaks out from the clippers. We've tried cutting his hair ourselves, taking him to the barber, and taking him to hair cutters specific for kids. I think that his reaction to going to the dentist is going to be just as dramatic/traumatic.

So, here's my question: are there dentists who specialize in dealing with patients with illnesses or other problems, pediatric or otherwise? If so, do any of you know of any in the Utah/Wasatch Front area? Also, what if Tanner has cavities? Do dentists have ways of taking care of them differently than how they would fix them for others?

If any of you have dealt with this before, I welcome any suggestions or comments you may have that can help me out.

Friday, March 12, 2010


Hey ladies, I haven't posted in a long time on this blog.  Our focus has been shifted to my husband for the last few months, he's been battling small bowel cancer.  Things are looking a little on the up and up in that department and I've been able to shift more of my attention back on my girls medical/therapeutic needs.

Reagan, my 2.5 year old, is doing really well.  Her microcephaly is still present but it seems the main thing it has effected is her balance... which could also be because of the mild CP.  At any rate, right at this moment we are very happy with her progress.  She's eating, saying 2 word sentences, walking, and identifying objects.  Hurray.  We know success is volatile with kids, but we're very happy she's in a good place right now -especially with our extenuating family circumstances.

Jaylee, my 7 year old, is the one I need your advice about.  They have retested her hearing and she qualifies for a personal FM system, which I think will be of immense help.  I've joined an ADHD support group here in Atlanta and have been getting great ideas for positive reenforcement, organization skills, and daily functionality (if any of you are interested I'd be happy to post).  However, the common thread that has occured at these meetings is the difference between ADHD and LD's.  OR the fact that they can both exists and exacerbate the other.  Jaylee is struggling in school, we know she has a cognitive delay, but I'm concerned that that's not the only issue.  She eventually learns the subject, albiet it takes her 3 months, she eventually grasps.  However, that 3 month gap is really effecting her confidence and such at school.  She also struggles with social cues.  Sooo.... we're doing our best to read about ADHD and social helps, we're also wanting to get her tested for any LD's. We've been working with the school system regarding her cognitive delay and it's just getting nowhere.

There is a wonderful program in Atlanta called "Beyond Words."  It works with the kids individually and in group therapy to find good coping strategies, teaches them social cues, and helps us in our daily parenting to reenforce those coping mechanisms.  Plus, it's legal health documents that will help us with our fight to get classroom modifications at school.

Here's the kicker.  They don't take insurance and just the evaluation alone is $560.  That's not including therapy or family sessions or anything on a routine basis.  They have a fantastic summer day camp for ADHD/Autistic/ADD/PDD but for every two weeks it's $860.  Ouch.

So, my fellow Tulip Moms, do you know of any financial grants out there that we could apply for? Any lottery numbers you feel good about? (haha)  Both my husband and I feel like Jaylee (and by extension, our family) would greatly benefit.  Do you know of any savvy ways to talk to the programs about financial plans? Or proposing payments?  I haven't hit the "we don't take insurance" or the "insurance doesn't cover this" bump like a lot of you have in the past... this is our first time..... help?!?!

Thursday, March 11, 2010

Hi Moms~ A Clay update

It has been forever since I posted but I want all of you to know that I think of you fondly. I hope you are all finding joy and solutions for your family concerns. We recently passed the 40th week post op with Clay...hip, hip, hooray! He has basically regained everything he lost from the medical crises. His weight is now back at 80 pounds after dropping to 63 or so pounds in July/August. He has grown approximately 3" of bone length (documented). He will celebrate his 25th birthday on May 19. He received a new power wheelchair a couple of weeks ago. We hope to attain a new 'hospital type' bed in the coming months called a sleep safe bed. I'll try to post the link for those interested in a very safe sleeping environment. We battled trying to keep him in a standard hospital bed during the approximate five months he was inpatient. The feeding pump setup is going well and we have adapted accordingly. We are back with using the pump via the Mickey gastrostomy button, able to discontinue with the jejeunostomy placement last August. All in all things are going well and we are amazingly blessed that Clay survived this last year. God still has greater plans than any of us realize in a given moment. Keep your seat belts fastened and hold tight to your faith. You are all stronger than you understand! I love you all~


Tuesday, March 9, 2010

Over at my blog......a Giveaway

After reviewing the Voice4u program for the Iphone/Ipad/Itouch I was offered to give away one to a lucky reader of our blog!.
Those of you who are DYING to try this out and have your kid FINALLY say something to you, this is YOUR lucky day.
The potential of this APP is amazing. It can take your non verbal or poor speaking child to the next level. I can not WAIT for the IPAD to come out so I can try it on there.
Major Bonus in this application is the ability to upload your own photos and to use your own voice.
So the rules of entry:
1st entry You must leave a comment telling why you want to try this application,
2nd entry follow me on twitter and leave a comment here with your twitter name
3rd entry Tweet or face book the contest!
* and YES you can get an extra bonus entry for Blogging and sending more people here!*
Winners will be selected on Friday evening and chosen from Random.org.
Please make sure a valid email is listed so that we can get in touch with you win!
And please leave a comment separately for everything you do... each comment is a entry!
Come on over to my blog@ prematuritywithlove.blogspot.com

Saturday, March 6, 2010

I can feel it in the air....

Don't you hate it when you can feel a "bad attitude" coming on? I used to have a depressed week every month. Since I have started school (7 months ago) I have only had about 3 bad days. But now I feel one coming on. I suppose it isn't coming on, it is here and I am just fighting it harder than I used to.

One of the big contributors is my Human Development class. It is a super interesting class and I need to take it for my major. It gets a little depressing though when I hear about all of the things that JT should be doing and what I have already missed out on. It certainly doesn't help that I am the only mother except the professor and so she askes me a lot of questions. She knows JT has CP and yet she still asks questions like, "Isn't it wonderful the first moments after giving birth and they lay the baby on your chest and you just have that bonding moment?" Do you really want me to answer that? I had to BEG my doctor to let me touch him before he was rushed away. I spent the first week unable to hold him and trying to not get attached because everyone thought he wouldn't live. I didn't get to have him lay against my chest until he was a month old. I usually just say something like, "It was different for me" or something like that.

So here she is asking me questions when I have nothing good contribute. I have tried not looking at her but she just stares at me while she "asks the class" and then calls on me specifically to give examples of whatever we are talking about even if I am not looking at her.

So it has been annoying but not terrible. Than we touched slightly on genetic defects and she said things that really made me upset. Namely, we were talking about microcephaly and she said that in about 95% of these cases the mother did drugs or drank while she was pregnant and that when this is found in a child they look to the mother to find out what she did. When I said that there are cases when they don't know what caused it and it wasn't something that the mother did she just said, "Not really, for the most part it is something the mother did." Thanks lady, now whenever these kids meet someone whose child has microcephaly they will think that it is the mother's fault. They will only think of the 95%, not the 5%.

So that was the 2nd really frustrating thing about the class. Now we are learning about toddlers. I love 3 year olds. They have always been my favorites because of the funny things they say and crazy things that they think up. Since he turned 3 the fact that I don't get to hear my son's thoughts has been so disappointing. I have been looking forward to this stage since I was 13 years old (since my sister was that age and I found how fun it was) and now I am missing out on my favorite part.

So I am already feeling bummed out in class and avoiding her gaze but she is talking about strange requests children make like her son saying, "Come out moon!" in the middle of the day. So of course she asks if I have any examples with my son. I say, "Not really. He doesn't talk." And she comes back with, "I know, my son doesn't really talk either."

What? Are you insane?! No, my son DOESN'T TALK! I waited 3 1/2 years for him to call me "Ma". He says ma, da, go, and ho. Don't tell me you understand because your son only speaks in 3 word sentances. Don't tell me you understand when your son not only speaks those 3 word sentances in English but he says them in Chinese too! Than she goes on to complain that last week at her son's 3rd birthday party she was "so embarrassed" because her son's friends are all talking in regular sentances and he is still using shortened sentances.

Embarrassed. I wanted to slap her. What I wouldn't give to have my son do that. She also informed me that her brother was born with CP but grew out of it. Huh? Does that happen? I don't see my son "growing out" of his brain damage. Perhaps he had a super mild case and just ended up being kind of clumsy, I have heard of that happening.

The thing is that she is a really nice person, just totally...oblivious. I go back and forth, do I write her an e-mail or just wait it out? There are only 4 more weeks of class, why make a fuss? We will be done with the toddler stage soon and then she will stop asking me all of these heart wrenching questions. *sigh* What do you guys think? Sorry this is a bummer post. On the bright side, isn't my son adorable? (He is helping with my husband's motor build)

Thursday, March 4, 2010

Where has the time gone?

I can't believe how long it has been since I posted on here!

A brief summary of our crazy life is.... our 7 (almost 8 now) year old son, Trevor, who has autism, has been struggling for several months. We are in the process of making changes at home and school to help get things back under control. For so long he was doing so well and it seemed like we had a son 'with a few autistic traits'. Now it seems like we have a son with autism who acts normal sometimes. It has been a very heart wrenching thing to go through for me. I have come up with some ideas, his resource teacher has as well and we are implementing them right now. He is also starting private therapy to help as well. It's been a long few months with him but I do feel like we can get things under control with some effort.

Our youngest Josh (over 2 1/2 now) has also had a long and rough winter. He has battled H1N1 and RSV in October and had constant ear infections since then. He had tubes placed as well as tonsils and adenoids out on Feb. 11th. He is doing well now and we hope to keep his health good. He has been kept in seclusion since october and we hope to get back out in the world soon. He has been put on 24/7 feeds because of severe reflux and vomiting. He is gaining weight for the most part and doing remarkable on the change in feedings. It makes it a little tricky to have an active 2 1/2 year old on a feeding pump all the time, but he has made the transition with no problems. He is such an amazing little boy and such a trooper.

We have gotten pretty much all of Josh's diagnosis down now and it is quite the list. Microcephaly, Brachycephaly, Dyspraxia, Speech Apraxia, Failure to Thrive (resulting in G-tube placement), Coronal Synostosis, Motor Feeding Delay, Sensory Processing Disorder, and a Seizure Disorder. Phew! He has come a long way already and is doing some good things.

If any of you have any experience with any of those disorders... feel free to give advice. It's been a long 2 years getting to this point and I am always looking for help, guidance and advice.

I hope all is well with all of you!!!