Bye-Bye Honey

This post is about a month over due!

Some of you may recall that we started feeding therapy with Robbie when he turned 13 months.  At that point he was getting all of his liquids from a dropper. He wasn't strong enough to use a bottle or sippee. We then found out he was aspirating on all liquids and the thickened liquids wouldn't even come out of a bottle or sippee.  Our wonderful ST, Blaire, introduced us to Honey Bear (a honey bear with an oxygen tube coming out of it). With it we were able to squeeze the thickened liquid safely and easily into his mouth. 

It took a long time to build the strength in his face, lips, tongue, etc so that he was able to suck the liquid out on his own.  Even more time to be able to suck ALL the liquid out without getting too fatigued.  I am happy to say he has made it!!!  In November we were able to say goodbye to Honey Bear! 

Robbie can now drink all his milk, water and juice from a regular straw sippee cup  :D  Not only that but he is beginning to be much more independent in all of his eating. He eats 2 to 4 veggie straws four or five days a week, eats his oatmeal on his own, eats much of his lunch on his own, and requests fruit puree pouches for snacks!  So very exciting!!!

We still have a long way to go and appreciate any prayers you have for him. Thanks for joining in our happiness!

O-fish-ally 3!

Robbie is three! He had a marvelous birthday. This year it fell on a Saturday so we were able to have the party on his birthday.  He had an absolute blast :D  Since he is obsessed with fish we went with a goldfish theme and he loved it of course.  It was a family party at the park and it was a beautiful day.

 The cake, cupcakes and marshmallow pops.

Robbie loved all of his gifts and had fun poking at his cupcake.  He wore himself out having fun with all his "cousins." He hardly stopped going the whole three hours! 

The most exciting thing about is captured in these two pictures!  For the first time ever Robbie played on the play ground equipment without prompting and in a proper manner!  He was able to maneuver the toddler playground all on his own!  Normally, when at a playground, Robbie will stay to himself and simply play in the mulch, sand, or dirt. It's very hard to get him to interact. This time from the moment the first kid arrived Robbie was interactive! Now granted a large part of his interacting was throwing mulch at others and this upset quite a few people, but Chet and I were thrilled because he was playing instead of staying to himself.  Given that his developmental age is 19 months I think it is what we can expect while he is learning to play with others (though we are working on teaching him more appropriate ways).  So he had a complete blast running around and throwing mulch and climbing and laughing and playing.  It was wonderful! 

One of Robbie's favorite gifts!

Evaluations

In the last week we finally received the evaluation reports we have been waiting on.  One was a Diagnostic Report from a team at UCF and the other an Occupational Evaluation and Plan from an OT at Achieve Pediatric Therapy.  Know that the findings are not necessarily exact and correct. The conclusions are drawn from a 3 hour window for UCF and a 45 minute window for the OT, and our observations and reports from home.  

UCF Evaluation

The evaluations done at UCF were an Oral Motor Examination and a Transdisciplinary Play Based Assessment. We sought this one out to see if Robbie had apraxia and what recommendations they would have to help him improve.  I will take several excerpts directly from the reports and fill in and summarize other areas.

According to the findings of the Oral Motor Exam, Robbie does not have oral apraxia.

“The TPBA-2 is a natural and functional assessment instrument that allows for cross-disciplinary analysis of development milestones”.  They also did a sub test of the TPBA-2 that covered Communication Development, Cognitive Development, Sensorimotor Development, and Emotional and Social Development.  According to this assessment “Robbie shows significant delays in his developmental milestones in 23 of 25 categories. . . Robbie averaged a 43% delay across all categories which is equivalent to an overall developmental age of 19 months of age”.

Clinical Impressions

“Robbie is an easy going and playful child. . . Robbie produced spontaneous speech on occasion but primarily relied on gestural communication”.  There is a bunch of other stuff in their findings and our reports that lead to, “These mixed findings do not confidently suggest apraxia of speech, however further signs should be monitored. Pre-linguistic apraxia of speech may be observed with an increase of articulatory load on his motor programming skills.”  So currently they rule out apraxia but he is on the young side for it to be diagnosed and may present itself later.

“Robbie’s attention abilities (He scored at a 4 year old level here) were a relative strength for him. The ability to attend to tasks and sustain attention increases the likelihood of a positive response to therapy. Additionally, the involvement and supportiveness of his parents contribute to a good prognosis.”

Recommendations

“Additional evaluation from a developmental pediatrician is warranted. Given Robbie’s delays, it is also recommended that there be continued monitoring for apraxia of speech. Robbie should continue with sensory motor based speech therapy.”

Occupational Therapy Evaluation

This was a much shorter eval since she was only looking at OT. Here is the gist of it.

Perceptual/Fine Motor Subtest – Robbie demonstrates solid skills through the 12-15 month level with passing and emerging skills through the 16-19 month level.

Self-Care Subtest

            Feeding Skills- Robbie has significantly delayed feeding skills (about 6 month with some higher skills)

            Toileting Skills- Robbie has passing and emerging skills through the 16 – 23 month level.

            Dressing/Hygiene Skills- Robbie does not have solid skills through the 12-15 month level.

Sensory Status: Robbie’s ability to perform age appropriate functional skills appears significantly impacted by decreased sensory processing skills.

OT Eval Summary

“After standardized testing, non-standardized testing, and parent interview it is concluded that Robbie has deficits in the following areas: fine motor/dexterity, visual motor integration, motor planning, bilateral coordination, motor control, attention to task, sensory processing and sensory modulation. Robbie has a loving and supportive family and shows excellent potential for improvement.”

So that is the short version of what we have lately learned. Basically Robbie is at about a 19 month level (he is 36 months) but has a good chance at improvement as long as we keep after it. We are currently getting OT at Achieve Pediatric. We chose Achieve because it works with sensory issues, had an OT opening and is closer to us than our other options. The negative side is that there is no current opening in speech and we are on a waiting list for it. We are also looking for a developmental pediatrician and have found only 2 in Central FL. The one we have been able to get in contact with so far does not take our insurance. Hopefully the other will.  In addition to this we are working on PT stuff at home (with Speech and OT) with our main focus to be core strength.

You can be praying for:

The right Speech Therapist for Robbie to become available soon.

We make the right decision about which Dev Ped to go to.

Financial impact of everything.

Wisdom for Chet and I.

The ingenuity, perseverance and strength to do a good job working with him at home.

Thanksgiving for the ability to seek after the best care we can for Robbie and being in an area where it is all fairly close!

Henry & the Ortho

Henry's appointment with the Orthopedic was today. His right leg has never held weight like the left, turns in a bit and now that he crawls he uses it differently than the other as well. Our pediatrician suggested we have it check out so we did. First off let me say how impressed we were with the new facility! I'm not sure if there was more than one donor but we were told that Larry the Cable Guy donated money for the Hip Dysplasia Institute (in the same new building as the Heart Health Center) and it is great. They even have the newest, fastest x-ray machine made, which is very handy when x-raying babies! We took Robbie to the same Dr when we first started his testing and at that time they were in the old, rather run down building, this is much better. 
Anyways, We had to wait about 20 minutes to get in but then we were out in about another 20, including x-rays and results (no waiting on development because it shows up on the large computer screen in the patient rooms!).  Dr Price watched him crawl and stand then did the hip / leg check. He was slightly concerned about how the leg felt so he ordered x-rays. A few minutes later a tech came in and took us down for that, we were back in less than 10 minutes. He came in about 3 minutes later and looked at the x-ray with us. Perfect hip joints! Everything looks like it needs too as far a bone structure.  The muscle is looser in the right leg. The Dr said that because he was a big baby he was probably cramped a bit more than normal and it caused the leg that was tucked under to bend a bit more. He says they see this in the bigger babies. Once Henry starts independently walking it should work itself out within 6 months. He said it is usually gone by 18 months. The Dr warned us that Henry may walk a bit funny at first, with the foot turned in a bit but it will work itself out. He was very confident of the results and did not suggest a follow up appointment.   He also said we were right to be concerned and have him looked at but according to the x-rays everything is fine. Yay!  Thanks for the prayers :)

Robbie Eval

Well the evaluation ended up taking a solid 3 hours!  On the up side the boy ate a ton of veggie straws, something he has never done but it was an hour past lunch so. . . .
The evaluation covered his gross and fine motor skills but more specifically focused on his speech and oral skills.  It was done by 2 UCF grad students and their professor, who has numerous years of experience. We were impressed by their knowledge and how well they were able to get him to interact.  At this point we don't know much but will find out more in about three weeks when we receive the report.  The main thing we did find out is that he does not have Apraxia. While it's good that he doesn't it is also disappointing because that would've been an answer with steps to take to help "fix" it.  Now all we have are more questions and still no diagnosis.  It was recommended that he see a developmental pediatrician, so we will now be looking into that.  That's really all we know for now.  I will update again after we receive the report.  Thanks for all the prayers.

Updates

A few good changes around here! 
First up, we switched Henry's formula - YAY!  A friend recommended one that worked well with her sensitive tummy babies and he is doing great on it.  One of the best parts is that it is less than half the cost of the other one! Second with Henry is that he can sit up by himself! Hopefully he will quickly learn to lay down as well :)  He is getting quicker at army crawling also.

Now on to Robbie. . . he is starting to try feeding himself with the spoon more and more!  The thin purees are quite a mess but he is really improving with the thicker stuff.  He is also in the process of learning to stay in bed - not fun.  Please keep the prayers going for his speech evaluation.

Life is busy but good!

Prayed Needed

The short of it is that Robbie most likely has poor motor planning skills.  This will effect him across the board,  including speech.  We need to have him diagnosed because if he does then his speech problem is a specific type called apraxia. It has a completely different treatment so it is very very important we get a correct diagnosis. If he does indeed have poor motor planning issues we are most likely looking at therapy for another 5 or so years. 

Please be praying we get a good team to diagnose him, a correct diagnosis and good therapists to treat him.

Thanks!

6 Month Check-up

Henry's 6 month check-up was today. He weighs 16lbs and is 27 1/4 inches long. He has dropped significantly on the growth chart! A bit above average in height and 25th percentile in weight.  Since both went down the pediatrician is not concerned. He is doing well overall. The only concern is his right leg. He doesn't put weight on it much and greatly favors the left. She referred us to a pediatric orthopedic so we will work that out soon. It is probably nothing that won't work itself out but we are gonna stick to the safe side just to be sure.
Poor kid is having some not nice reactions to his shots but doing well otherwise  :)

Brothers

So, Robbie is finally warming up to baby brother Henry.  He really enjoys spinning, jumping, laughing and doing whatever he can to get Henry to laugh. Sometimes this includes violently shaking whatever Henry is in so we have to stay close to Henry at all times when Robbie is awake.  The other thing Robbie enjoys doing is trying to get Henry to touch him.  It is really cute! He will slowly lift his hand towards him trying to intice Henry into touching him, if he doesn't Robbie will take Henry's hand and put it on his. He also gets quiet, closes his eyes and slowly moves his head really close to Henry trying to get him to touch his face or hair (above pic). Robbie will also grab Henry's hand and stick it on his face if Henry doesn't do so fast enough. Odd but super sweet!  I love my little boys!!!

Hallelujah!

I heard the angels singing the Hallelujah Chorus as my heart did a happy dance! Lunch. Today. A veggie stick and Robbie. For the last few days I have been offering him a veggie stick at lunch. He plays with it, sometimes puts it in his mouth and occasionally makes a light crunch on it but not enough to break it. While he does this I have been following the advice of his feeding therapist (on break) and a book we read recently on feeding issues, and have not been pushing him at all and just giving silly encouragement when he does something good with it.  Basically I act like it's no big deal. 
Back to today. As usual I handed him a vs and he started his thing, next thing I know he takes a big crunch and breaks a piece off. He let it roll around and fall out. He then shocked me by picking it up and putting it back in his mouth! He played with it in his mouth until it dissolved and moved it around, then swallowed it. He then did the same with the rest of it being super silly the whole time. I couldn't believe it and was so happy! But that's not all. He started signing a bunch of stuff (he confuses them when he really wants something) and pointing and I thought he wanted a toy on the table. He got mad when I offered it to him. Then on an off chance I said, "Do you want more?" He quickly nodded and signed more. Que angels . . . I gave him another and he promptly shoved the whole thing in his mouth and started chomping away and signing for another! Three! He ate three veggie sticks! In-a-row! Shock, joy, elation, heart doing a happy dance. All that while on the outside I had to be all silly yet calm encouragement or he shuts down. Wow! Now I know this does not mean that he will suddenly start eating or even that he will even eat another veggie stick within the next month but this is a huge milestone for him. My hope has been renewed and for that I rejoice.

The Nook

Chet and I LOVE reading.  We both read non-stop and always have.  Hoping to pass on our love and encourage a wonderful past time to our boys we decided to invest in a Nook.  Yep, I know it's a big investment but you gotta do what you gotta do. . . . What Chet?  No way?! Really?!  Well, apparently there is some new fangled widget that is also called a "Nook".   Yep, I looked it up and sure enough this is a “Nook”:

Whoulda thunk it?!  I think our Nook is waaaaaay better.  Here it is!

Originally it was going to go in Robbie’s room and be a book nook but due to stairs, heftiness of the piece, and such it landed in the play area. So instead of being solely for books it holds toys also. Here is the before and after.

Here are a few of my favorite details. The material and knobs.

Four more things I love!

And here is Robbie knowing just what to do with it!

Doing all I can to make reading more enjoyable!

June Menu

I've been planning weekly menus for several years now and finally decided it was time to step it up.  So here is my first shot at a monthly menu!  Much of it stays the same week to week to make things easier and keep costs down. Next I need to add fish back into our diet and throw in a few salads for dinner!

Long Robbie Post

WoW!  We went to therapy today thinking it was a normal visit and were thrown for a loop.  First off the person who oversees his therapy funding was there to reevaluate, secondly he ended up having physical therapy as well and last of all we left and will not be back for an undetermined amount of time. 

            The PT reevaluated him and then discharged him! No more PT!!!  This does not mean he is caught up to his peers. It does mean he can safely navigate his environment and he is now initiating improvement on his own time table.  We are beyond grateful for all his PT has done and how she has often gone out of her way to find ways to help him improve.  We will see her occasionally when there for FT but will definitely miss “play” time with Ms Kris.

            Feeding/Speech Therapy also went quite unexpectedly today. Over the last several weeks Robbie has become increasingly defensive when it comes to eating. His therapist voiced concern that if we continue pushing him he will begin to go backwards instead of progressing. She has seen this happen in other patients. So the plan is that he will continue eating what he currently does but we will put on hold trying to get him to chew for a few months. We will offer him chewable foods at his meals but if he rejects then that is fine and we don’t push it at all.  Hopefully within a few months he will be more receptive to trying again and then we will resume feeding therapy.

            This leaves Speech Therapy. Everyone agreed he needs to continue with speech since he is growing increasingly frustrated with his inability to communicate. Since it takes and hour to get to therapy and an hour back and ST is only ½ an hour we decided it would be prudent to change therapists until we start back with FT (there are no feeding specialists closer). So for the time being Robbie will receive in-home speech therapy. This will be so much easier!

            So to sum up….YAY for Robbie!  Pray for continued improvement.

Redneck Waterbed

I’ve had a lot of people asking “What is a redneck waterbed?!”.  I found the idea on another blog http://playathomemom3.blogspot.com/    Here is how we did it and what I’d do differently.

You need:

• Plastic sheeting (clear tarp) a minimum of 4 mil.
• Duct tape
• Water hose
• Dish soap

1. Fold the tarp in half and duct tape all but about one foot of the edges.
2. Turn it inside out and duct tape again. Make sure it is well sealed.

       3.  Fill with water then duct tape the opening shut really well.

        4.  Pour water and dish soap on top and have fun!

        5.  After awhile we sliced it open and made it into a slip n slide. It was a huge success!

What I would do differently:

• I recommend 7 mil since ours broke after about 10 minutes of use. It held up for another 15 minutes or so even with the hole, until we cut it open.
• Add lots of food coloring. The blog where I found this did this and it looked really neat. We did add some blue to ours and it was cool to about 1/3 of the way full then it seemed to just disappear. Next time I will add a lot more. Just be sure you are wearing clothes that can get stained.
• I would buy a bigger piece of plastic. We bought 12 x 9 and bigger would’ve been more fun.
• No slip n sliding on the waterbed!  That is what broke ours and it doesn’t work to well anyways.  When you try to slide hard on it the water gets pushed in front of you and so ends up becoming a wall that stops you.

Have fun and be safe!

Summer Fun List

        Thought I would share with you our Summer Fun List.  A few things we have already done. One I added because we have done it and I like to put things on lists I can check off - it makes me feel accomplished :)  Several of the things we hope to do repeatedly and a few of them at least once. Maybe it will give you a handful of ideas for your summer and if you have any I could add to it I'm open to suggestions!

Summertime Fun!

The temperatures are climbing and so is potential for fun  :)   This year we have created a Summertime Fun list of all the things we want to do before Fall arrives.  While the boys and I were in Texas Chet checked one thing off the list, he made a sprinkler.  This evening we checked off another as washing the cars turned into trying out the sprinker.  It's a success!  Can't wait for the nieces and nephews to come and try it out  :)   

Yay for Robbie!

Two weeks ago I stumbled upon a new Robbie improvement.  We were playing in his play area and I was drinking a bottle of water.  Robbie likes bottles of water...to chew on.  He kept trying to take it and chew on it, so thinking I would deter him (he dislikes anything cold and thin liquid) I opened it and gave him a sip. To my shock and delight he smiled, said "yum" and wanted more! He hadn't asperated so I gave him a few more sips.  Next I went and got his new sippy straw cup and put in cold water.  He drank it!  He has been having cold liquids with no thickener ever since.  This is a great break through for him and one that I hope will lead to more. Thanks so much for all the prayers and please keep them coming  :)

Celiac?

Today Robbie went to the Dr to see if we could get him tested for celiac disease, a gluten allergy. In doing more research on benign congenital hypotonia I came across several people who had linked the two in their children. When they put their kids on a gluten free diet the hypotonia improved. The results varied from family to family from it being practically gone to mild improvement. This was not a controlled study but stories from individual families that I happened across. Since there are several people with celiac in my family tree I figured we had better get him tested! The Dr also ordered an allergy profile to be run for other food and environmental allergies. They had to take a few vials but he was a trooper and did really well. Only a little bit of crying and hysteria when he was poked. We hope to have the results by the end of the week but we all know how that can go! The Dr did warn us that the test will only show an allergy to it, not a sensitivity or intolerance. She suggested that even if the results come back negative that we do a 6 month trial anyway just to see. Please cover this in prayer. I will let you know the results when we find out.

New Direction

Hi friends and family!

Yes, this once was “Everything Robbie.” Fortunately Robbie no longer has a ton of complicated
and long information to relate so we decided to change this into a family blog. I guess I’ll start out with updates on all of us and then post as varying things arise.

Let’s start with the head of the home, Chet. This way you have to read all about us to get to Henry ;) Chet is still working as a software engineer for Clear Village in Orlando. The company builds software for local governments. At home he is continuing to work on modifying the remote control lawnmower he built. He is an amazing father and husband!

Now on to me, Mandy. I am still loving life as a homemaker, wife and mommy! When I’m not busy with the little boys I’m cleaning or working on my latest project. Currently that is an entertainment center that I’m up cycling to something fun for the boys (you will what when
I’m done).

Robbie is now a very happy and rambunctious two year old. For those who don’t know, he has a muscle disorder called hypotonia (don’t ask, look it up). He recently gained enough strength to climb and enjoys doing so all the time on everything! At the last Physical Therapy session his PT
said she wants to do her evaluation next time because he may be ready to stop coming to play – YAY! Feeding therapy isn’t going so well though. Robbie will now be wearing his shoes all the time (excepting nap, bath and bed time). His feet are very flat and so his toes go outward. He will wear special inserts in his shoes and as his feet grow around the inserts they will fix themselves.

Our newest little edition Henry is doing very well! When he was about 2 weeks old we figured out he had some food intolerances, I quickly changed my diet. As the weeks flew by I cut out more and more. He improved a lot but still wasn’t doing as well as we thought he should be. Most afternoons he spent very uncomfortable and it wasn’t unusual for him to be screaming in pain at night. Last weekend we decided to try out a special formula for 4 days. He is a different baby! So happy and not in any pain!!! Nursing is very difficult for me to give up but seeing him do SO well I just can’t imagine making him go back to it. Henry is now napping well and sleeping through the night! Now that is exciting :)