MRI

The results for Robbie's MRI and blood tests came in the mail today. All normal! What this means for us now I do not know. I guess we will discuss that with the neurologist next week. Praise God! Thanks for all the prayers :)

Happy Things!

This will be somewhat random (as if all the rest aren't!).

Robbie has a new tooth! This makes tooth #5 and he is trying to get another through.

A new favorite thing for him to do is rock back and forth on his knees. This is great for his PT. It is pretty much all he wants to do now :)

He is starting to string lots of sounds together, making it sound like he is talking. It is really fun to hear him jabber.

Robbie's first birthday party was last Saturday. He was very sleepy when it started but within an hour got a second wind and had a blast! He was lucky to have a Great Grandma and 3 Grandparents there along with all his Aunts, Uncles and cousins. While not rocking on hands and knees, he enjoyed opening his gifts and playing with the new toys. When it came to the cake he didn't really care for it. Chet had to put Robbie's hand in it to get him to touch it. We touched a bit of frosting to his tongue and he gagged. So it didn't get very messy. . . . After getting cleaned up he spent the rest of the time playing and had a great time! Thanks to all who came!

Feeding Evaluation

Robbie's feeding evaluation was today with a speech therapist (Blair, who has a feeding specialty). It went very well, he was true to form, even gagging and throwing up the puffs. She fed him a few different foods and watched how he ate, what he refused, what he would touch, etc. She also asked about a million questions :) When he was done Blair gave me a few papers with foods he should be experimenting with and meal plans to get the most nutritionally. She said he seems to have oral motor problems. He can't move the food correctly in his mouth.

What this means for us. . . We have to get him used to chewing all kinds of stuff. Since he won't on his own we have to start making him put things in his mouth like carrots and celery as well as toys. We also have to continue giving him puffs, Gerber Graduate foods and table foods. He will gag and throw up. As he does this we are to use positive statements and positive reinforcement with a smile on our faces. Doing these things will desensitise him to the various textures, tastes and smells, as well as move his gag reflex from the front of the mouth to the back (this usually happens normally as kids stick stuff in their mouths but since he doesn't....).

So we will now start going to speech therapy for this once a week as well as PT. Pray that the insurance will cover most of it and that they will be able to make the appointments back to back so we only have to go once a week out to Celebration.

He is still scheduled for the swallow test in January. That will show precisely what he is doing with the food once it is in his mouth.

Catch Up

Well I've lagged behind a bit but oh well! The EEG results came back fine! Praise God and thank you for your prayers :)
Robbie has now had 2 physical therapy appointments. Between the 2 he improved :) She gives us a few specific exercises to work on during the week then builds on it the next week. He goes once a week.

His therapist, Kris, is of the opinion that he will come along well with the therapy and that they won't find anything wrong in the MRI or other tests. She does believe that he has sensory feeding issues though. This means that food textures, tastes and smells cause him to gag and / or throw up. This definitely sounds like him. He is scheduled for a swallow test in early January but the speech therapist (with a feeding specialty) wants to evaluate him before then so he is now scheduled to do that in 2 weeks.

We are getting a bit overwhelmed trying to keep up with it all. Robbie's MRI is early Thursday, his regular check up Friday, PT next week, followed by the neurologist follow-up, eye dr follow-up, more PT, feeding evaluation, etc. Oh and the holidays. . . .

On the up side, he is improving in PT and we can get help for his feeding issues. Also, Wednesday is his first birthday!!!!! Yay!!! Much to be thankful for!

Please continue praying, thanks :)

EEG

Well the EEG went pretty good. He had to be "sleep deprived" because they need to see the mind alert, getting sleep and at rest (asleep). When we went in he had to lay on a bed while the technician attached about 15-20 metal wires to his head. They use a paste and a small piece of gauze to attach it. Chet had to hold his body and arms still while I held his head. This of course caused him to scream like crazy. It tore at both of us to see him carrying on that way. He stopped only momentarily when I whistled, he liked that for about a minute then screamed some more. Once she had all of them in place she wrapped gauze around all of it to keep it in place.

Chet laid on the bed with him to keep him calm and from squirming. The light was turned off and she flashed a strobe light at him several different times. After that she needed him to fall asleep. He wasn't. Eventually I left because he tends to do better falling asleep with Chet. Around 30 minutes later it was finished. The tech came and got me and I took a picture :) She removed all the stuff from his head then proceeded to scrub his head with a wet washcloth to get the paste out. He stayed asleep through all of it!

The technician told us that the dr would look at the results today and would call us if there was anything to be concerned about.

Thanks for your prayers :)

Neurologist

Today was Robbie's Neurologist appointment. She threw alot at us. The diagnosis is muscle weakness, and basically she wants to run a bunch of test to make sure there is nothing serious causing it. So we are scheduling an EEG, MRI, Swallow test and extensive blood test (including some genetic testing). Of course it all needs to be done ASAP and that can be difficult. Please be praying we can manage to get them all done and results in within a 6 week time frame, which is when he goes back for the follow up. The Dr said it was encouraging and a good sign that he has recently improved. She also said to get him going with physical therapy ASAP. We are still waiting to hear back on that.

That about sums it up!

Praise God!

Praise God! His bones and hips are fine! No surgery or casting! I'm so very relieved.

The x-rays show no issues at all. He said Robbie is still within the normal range and he believes there is no cause for any real concern. They called it a normal developmental delay that could have been influenced by so much time spent on his back, and not his tummy, due to the acid reflux. They recommended Robbie see a neurologist just to cover all bases. He already had an appointment scheduled for Wednesday so we are set for that. The Dr also said that with some physical therapy Robbie should be caught up in no time at all. The Early Steps Program, that he was recently evaluated for and then accepted into, is in the process of finding a PT that will come to our home. If they cannot find one, because of where we live, then we will have to take him to a clinic in Celebration or at Arnold Palmer.

Please pray that they will be able to quickly locate a Physical Therapist that is willing to come to our home. They say that it is the best way because the babies do better when the parents can be taught what to do using his toys and things around the house.

Thanks for all the prayers so far!

Assessment

Robbie's assessment went very well. While 2 ladies "played" with Robbie to assess his skills, Chet and I were asked a bunch of questions about other things that they needed to know or couldn't find out in clinic. He was able to do just about everything they tried to get him to do with the exception of crawl position or standing of course.

He qualified for the program. They are now in the process of finding a physical therapist that will come to our home. Since we live in St Cloud that will be difficult and we most likely will have to take him to a clinic. Please pray that they will find someone to come in home. They say that it is far better that way because they can teach us exercises and such that can be used with his own toys.

All this hinges on how his orthopedic appointment goes next week. If the ortho says Robbie needs therapy and releases him to the program then it's a go. If he needs surgery then therapy, we will have to wait until he is released for that. If the ortho says no to the therapy then we simply let them know and they close his file.

All other areas of testing turned out great so they have no other concerns. Praise God!

Dr Follow up

Robbie's follow-up with his PC was today. He has gained some weight, so that is doing good. We are now supposed to take him to a pediatric orthopedic for his legs. The Dr said he is on the slow side in general and will start doing more stuff when he is ready.

His home study for the development team is Monday. Please keep that in prayer, that the lady will make a wise decision.

Robbie's Surgery Follow-Up

Today we had the follow up of Robbie's surgery. The Dr removed the bandaging and catheter. He said everything looked great and Robbie can go back to normal life! So far there doesn't appear to be any fistulas, we are to keep an eye out for it. Please pray there are none! Robbie has to go back in one month for a final follow up.

Next: the ultrasound on Robbie's hip....

Surgery

We have to be at the hospital at 6:30 in the morning. Not sure when the surgery will be exactly, but he is the first. It should take about 3 hours, then recovery. All prayers are coveted and appreciated!

Moving with Purpose!

Robbie now rolls, scoots and slides with purpose. No longer random, if he sees something he wants out of his reach he figures out how to get it!

Not being able to crawl obviously won't slow him down :)

Urologist

Today was our final visit with the urologist before Robbie's hypospadias surgery. He said everything looks good and is a go. The surgery is scheduled for next Friday, the 24th. They will call us a day or two before to let us know the time but they expect it to be early. We will be allowed to stay with him (except when they administer the anesthesia) until he goes into surgery. It will take 2 to 3 hours. We will be allowed back with him when he starts to wake up. We will then be with him for a few hours until they release him. Recovery is expected to take 2 weeks baring complications.

Please keep these things in prayer:
1. He stays healthy, so it won't be postponed.
2. He has to fast for 8 hours before, that he won't be too upset.
3. Anesthesia goes well.
4. The main thing that could go wrong is called a fistula. It is a gap in the sutures. There is a 10% chance of it happening. Pray it won't happen.
5. That recovery goes well.

Amendment

Robbie weighs 16.2 pounds and is 29 inches long. Whoops! I'm glad I wrote it down somewhere and saw it before I entered it into his baby book.

9 Month Check-Up

Robbie's 9 month check up was last Wednesday. He is now 17 lbs and 27 inches!

He is now taking Zantac for acid reflux. Already there has been improvement in his sitting and belly times without him getting sick and spitting up. Yay!

There are two things the Doctor is concerned about and you can be in prayer for. Robbie is in the 3rd percentile for weight. She wants us to fatten him up because that is too small. We are now adding yogurt and meats to his diet. The Doctor said the acid reflux could be one of the reasons he is so low weight; the acid keeps him from properly absorbing the nutrients.

The other issue is the fact that he won't put any weight on his legs. When checking him over she heard a "pop" in his left hip joint that hasn't been there before. She thinks this may be a reason for it. Once Robbie's surgery is done and he is healed up she referred us to a Developmental team at Arnold Palmer that we have to take him to. They will do a thorough work up on his developmental skills and let us know if he needs physical therapy or to just wait a few more months and see.

Robbie is happy as ever and other than those two concerns doing well!