The Diagnosis

Today was our follow up with the developmental specialist. His conclusion is that Robbie does have autism, however if we had gone last year this would not be so.  This year the DSM 5 came out and in it they decided to do away with the distinctions of Autism, Aspergers and PDD-NOC. All now are simply referred to as Autism or ASD.  If this were not so Robbie would have been diagnosed with PDD (pervasive developmental disorder). So he is on the lower end of the spectrum and high functioning. We asked the Dr's opinion on whether or not he thought Robbie could eventually function "normally" in society and he said as long as his speech continues to improve he sees no reason why not but that he will always be a little quirky. So we are to hit speech and also ABA hard to improve his social skills.  Of course this is our hope and prayer.  The only thing this changes really is our insurance which will now have to cover services in clinic, however it will also make our insurance go up so it may not change much period.  We are still to be on high alert for seizures and tell the neurologist of anything suspicious. He is also supposed to wear a medic alert bracelet.

 A week ago we lost our in home therapists but, praise God, he is already back in with speech up by Waterford Lakes and hopefully by next week OT as well. On the same day! 
We are looking hard at different centers for ABA therapy and praying God will lead us to the right one.

Both boys are happy and loving the weather and improving steadily! 

 I can't figure out how to put pictures on here from the ipad and the laptop screen is still busted so no pics for now :)

The Boys

Henry had is 18 month check up today! I cannot believe he is that old already!  He is getting big - 75th percentile height, 33 inches and 25th percentile in weight, 24 pounds.  He is doing really well, only issues are a current ear problem causing fever and his milk allergy, otherwise he is doing great!!!  He still won't stop playing with all electronics and plugs and will go to great lengths to get them. Henry climbs, runs, escapes, laughs and babbles non stop.  He is one happy little boy :)

Robbie also had an appointment today to discuss his reaction to peanut butter.  We are now to carry benadryl and an epi pen with us now and hope he grows out of it.  He is doing well, very sleepy and still recouping from his sleep deprivation :)

EEG / Neurologists Results

sleep deprived and ready

The EEG went well.  Robbie was not happy to have all the electrodes (25) pasted to his head and then have his head wrapped in gauze but he did well.  It only took him about 5 minutes to fall asleep thanks to the sleep deprivation :)

After the test we went to lunch and the store, then back to the dr for the results.  The EEG showed abnormal activity while awake and asleep.  The Dr said this means he is at risk for having seizures (not that he currently is).  We are to just keep an eye open for it and he said we would know it if we saw it.  We are also to keep a close eye on him while he is climbing, playing on the playground equipment, swimming, etc., anywhere where if a seizure occurs he could be hurt.  The Dr said he may never have one but we now know it is a possibility.  He also said this could be contributing to his learning delays but not connected to his hypotonia.  They did an autism screening as well and that in combination with the Dr’s interaction, they do not believe he is autistic but close and with continuing the path of therapy and improvement he is on even that may be erased.

We go back for a follow up in 6 months to discuss any changes or improvements that we note in him. 

 Happy boy after lunch

Feeding Center Evaluation

Today we went to Arnold Palmer to have Robbie evaluated to see if he is eligible for their intensive feeding clinic.  The evaluation was done by an OT with a Dr, Social Worker, and Nutritionist present and asking questions. When they were done feeding him and gathering data they went to another room to confer then came back with their findings and recommendations. Yay for quick responses! We will get the written report and official findings some time next week. It took about 2 ½ hours over all.

He is a great candidate for the program!  (*Cheering!)  They gave us 2 options. First, we could enter into the program at this point and they believe that by the end of four weeks he would be eating pureed table food.  Second, we could attempt to get him to that point at home then go back and have them get him from table puree to table solids. We are choosing the 2^nd option.  They said we may fail miserably and if we do that’s ok we can just bring him in, or he may do great and even progress to solids on his own and not need to go in at all (wouldn’t that be wonderful?!).  

So that is where we are.  Apparently the first step is from baby food purees to table food purees. We are also to work on getting him to chew non food objects and refrain from giving him chunks in his purees that he can simply swallow (a bad habit we have been unintentionally reinforcing).  At the same time we can be encouraging him to chew things like veggie straws.  All this is to be accomplished by using positive reinforcement.

We were very relieved that he is cognitively ready for the program and they think he will make really good progress.  I was kinda hoping for more of a miracle, like “yes, we can get your son from baby purees to 50 solid foods within four weeks!”   Oh well. I will be ecstatic if he has 1-3 table foods he will eat by the end of the year.  Your continued prayers are deeply appreciated!

Second Opinion

Today we saw a different Developmental Pediatrician for a 2^nd opinion. I’m glad we have.  Our first experience brought nothing but frustration and was not helpful at all but this one was quite different.  The first place we could not see the Dr (even after a 5 month wait); here we saw the Dr and his assistant.  The first place said mind and body are separate so we will not talk about or concern ourselves with things physically wrong (go to a diff Dr for that); here he was fully examined and the Dr wants to dig farther to see if we can find a root cause for his hypotonia and delay.  The first place slapped a label on him, practically as soon as we got our foot in the door and then based everything else on that and mostly talked at us. This Dr is trying to collect as much info as possible, from us and Robbie’s other Drs, before making any sort of diagnosis. Which is very appreciated.  He did say he could see why someone may say that Robbie is autistic but doesn't see it enough to base it on his first meeting and no further info. 

So where we stand now is:

1. We will still go to the follow-up of the evaluation done at the other place to see their findings.
2. He will be having another ekg (the Dr said things can change since the last one)
3. Possible further genetic testing depending on what was done at the other place.
4. Follow-up with this Dr after we fill out questionnaires and he collects the medical histories from other Drs.
5. Need to look into schools because he needs more socialization.

All in all we liked this Dr better, certainly not due to facilities but due to his thoroughness and desire to get a comprehensive look.  Lots more questions and appointments to go through. We are still hopeful that if we continue our course of working hard on therapy that he will one day lead a typical life.

Endoscopy Follow Up

Today we went in for the follow up to last weeks endoscopy. Everything is normal and in great shape.  This means his eating problem is not caused by any sort of allergy or other physical problem in the upper GI.  So it is probably due to the hypotonia, global delay, and sensory integration problems.  They got us on the wait list for the evaluation at Arnold Palmer’s feeding intensive program. We are blessed by having a top notch Dr who helped in the founding of the program so we got on the list a bit faster.  What happens now is that we wait for a phone call to schedule the evaluation. There are 5 people ahead of us on that list.  The evaluation is extensive and if they decide he is eligible we will then be put on a wait list for the program (even longer).  The program is 3 – 4 weeks of intensive therapy at Arnold Palmer. We would be expected to have Robbie and one of us there Monday – Friday 3 meals a day, some snacks, and some training.  The Dr warned us it is very intense and expensive (pray about insurance covering part, at least).  They only want people who will be serious about it and kids who are good candidates. So please be praying that we will be able to get in.  His lack of eating real foods is the hardest thing we deal with with him and it’s the main thing that keeps us from being able to really interact and live as a normal family together.  All the other problems are easy in comparison.  We will keep you updated!

Upper GI Endoscopy

This morning was Robbie's endoscopy at Arnold Palmer. We arrived at 7:30am and had to wait until 10:20 for the procedure due to the previous patient having complications. He did well during the wait considering the fact that we only had a window (8th floor) and the few books and toys we brought with us to occupy him. 

He did not like having his vitals done. 

Always so cute in the hospital gowns.

Getting the IV in was the hardest part. A lot of blood and crying but they got it in. It doesn't help that he is allergic to the tape and other sticky stuff they have to put on him and so it irritates him to have it all on. After that they gave him a sedative to calm him to take him back. It was funny because he was fussing and then instantly zoned out and was calm :)

The procedure took only about 10 minutes. Everything looks normal! We will get the biopsy results next week and talk with the Dr about Arnold Palmer's feeding intensive program. 

He coughed himself awake early from the anesthesia so he was grumpy and woozy for awhile. We were told to not let him walk for a few hours and no stairs today at all. He stayed a bit fussy but ate dinner well and will hopefully sleep good tonight. They warned that the procedure might make his cold worse and so far it seems to be the case. 

They gave him a turtle to bring home :)

Thanks for keeping up with us and for your prayers!

A Scope & A Screening: Robbie Update

First off, if you haven’t heard the good news Robbie’s genetic testing came back all normal!  They test for all the main things they know usually are wrong and of those things he is in the clear :) 

Due to the health and eating concerns we had about Robbie our Dr referred us back to the GI Robbie had seen a few times in 2011.  After talking with him for a bit he decided we should change his reflux meds – hopefully that will make a big difference.  Secondly he decided to do a scope, so that is now on the calendar for later this month.  Robbie will be put to sleep then they will scope him, taking samples and video along the way.  The Dr is checking for 2 main esophagus problems that could be causing his refusal to eat and seeing how his stomach and intestines look.  Pray about him being put under since it is always risky with him having a muscle disorder. If all that checks out fine then the Dr will put us in touch with a feeding intensive that Arnold Palmer runs. It’s hard to get into and I’m not sure how I feel about it but we may be looking into it.  I’m amazed it has taken this long for anyone to mention that the program is here in Orlando, I’ve read of them but figured we had none in the area since it was never mentioned.

Also on the calendar is an Autism evaluation/ screening.  Tomorrow morning actually!  I know exactly how I feel about this and I am dreading it. We won’t get the results until the follow-up appointment and since we are insisting on seeing a Dr instead of a nurse for it we are still waiting for an appointment. Currently they are saying October!  Our alternative is to call a few times a week asking if there are any cancellations and get lucky. PRAY we get in MUCH sooner than October!!!!!!!!!

In the mean time we LOVE his new OT! The down side is that she is only temporary, through the summer.  Unless we can talk her into doing home therapy or evenings. Please pray big time that we can continue with her, the difference has been amazing, I feel like we are finally getting somewhere and we've only seen her 4 times.  She is absolutely wonderful with him and we are able to translate his therapy really well into the home :D

Last bit is that we are waiting on his speech therapist to start coming back to the house since the place he gets OT couldn't line up that and speech on the same day and 2 trips a week to Waterford is out of the question.  She said she will be able to we just have to wait for an opening in August or so.

If you are still here thanks for reading up on Robbie and thank you so much for all your prayers!

Fun at the Park

Saturday morning we had a fantastic time at the park!  Henry played for the first time on the toddler playground on his own, climbing and sliding and going up and down the steps over and over, and even swinging a bit. He had a blast! 

Robbie played on the toddler playground and then on the big boy playground all by himself.  He even went up to the tall slide a few times!  The best part for us was that he played with a little girl and did not once throw mulch at, hit or spit on anybody :D  Just ran around, climbed and played.  Yay!!!!!

They totally wore themselves out and had so much fun :)

Robbie's Bladder Test Results

This was Robbie this morning when we took him for his tests at Arnold Palmer. He had a fairly high fever and was shaking bad but still trying to watch the Mickey Mouse Club House :)  He had 2 tests done, a renal sonogram and a vcug (look it up if you want to know).  He did awful in the sonogram, cried and cried but did a bit better in the vcug.  Fortunately due to the high fever they called in the radiologist to check the results right away (instead of waiting a week) and he called the Dr and gave him the results verbally. So we went directly to the Dr from there. 

This is how he looked waiting for the Dr. After the tests he just kept sleeping anytime I held him.  The great news is that Robbie's bladder and kidneys and all the connectors are fine!  Also the type of bacteria in his bladder that keeps showing up as a uti is typically one that does not cause problems and does not need to be addressed.  However he was running a high fever and would not eat or drink. A quick check revealed flaming red tonsils. Tonsillitis. That's the bad news, but that is news I can live with. So he is now on antibiotics in case it is bacterial. He will have to stay away from everyone for a few days and we will be washing our hands like crazy and trying to keep Henry away from him.  

Thanks for all the prayers!  Now just pray he gets better fast and that the rest of us do not get it!!!

Robear

Our little Robear has been having a rough time lately.  Since Christmas his speech and physical capability has boomed but his eating and behavior have relapsed.  He has been increasingly combative when it comes to eating or drinking anything.  We have an appointment with a Developmental Pediatrician in May (soonest they can get us in), hopefully that will lead to more answers and ways to help him. 

A few weeks back we took him to his pediatrician because for about 3 - 4 weeks everyday by noon he was like a zombie.  He was pale, not talking and falling asleep by 12:30.  It was concluded that his worsening reflux was taking a toll on him and he is mildly anemic. So we upped his reflux meds and put him on a vitamin with iron.  Within 5 days he was doing SOOO much better.  At the same time they did a urinalisis to check blood sugar and such but found a uti.  Well it isn't normal for little boys to get utis so now we go for more tests.  We will be heading up to Arnold Palmer next week for 2 procedures.  Two of the things they will be checking for is if he is emptying his bladder all the way and if urine is going back up into his kidneys.  Please keep the whole process and him in your prayers. He is currently getting over a bad tummy bug and hopefully will be all better by then!

Mums the Word

A little update on my Mom.  She has had pain and numbness in her legs, arms, hands, neck and shoulder for a bit now.  Her chiropractor had ordered an MRI and they found a tumor in her spine along with a herniated disc.  She went to the NeuroSpine Institute and 2 appointments and an MRI with contrast later and we ended up seeing a neurosurgeon at Shands Hospital yesterday.  Essentially he is very confident, 99.9% sure, that it is NOT cancer!  However surgery is needed and soon to keep her from going paralyzed.  Pre Op is next week and surgery at the beginning of the following week.  They will have her open for 3-4 hours, followed by a 4 day hospital stay, then 6-8 weeks of recovery.  The tumor is in her spine so there are risks but the surgeon allayed most of our fears.  He said rehab should not be needed so the boys, Chet, and I will be very happy to have her with us until she is back on her feet.  

We are blessed with wonderful friends and family who are all jumping in to help.  So all I am asking for is your prayers!  Please keep her, the Dr's and all involved in your regular prayers.  Thanks so very much!

Growin & Changin

The boys are growing and changing so quickly!  Robbie is now 42" and 36lbs.  Henry is about 5lbs since his birthday and is growing right out of his 12 month clothes.  Both of them are becoming chatter boxes!  Robbie is labeling everything and even starting to use a few to communicate. Henry now says (in his own way) mama, dada, all done, night-night, uh-oh and kitty. So very cute!!!  Henry can also open doors now and Robbie has learned to stick his hands in his pockets and is fascinated by the process of it and how many ways there are to do so. 

The rest is a few pics :)

Henry Turns One!

Henry had a great first birthday!  We were able to celebrate at home with family, food and cake. Well Henry didn’t have cake. Wouldn’t even touch it. Cried.  Oh well, maybe next year (that’s what I said about Robbie too). 

Henry warmed up to everyone and walked around and played.  He really enjoyed opening gifts and seeing everyone!

 The chair Daddy made me!

At his one year check up he weighed in at 20 lbs and 5 oz and was 30 inches long!  He is a growing and happy little boy who runs all over and gets into everything :)  Happy birthday little man!

Quotes

Came across these the other day and just wanted somewhere to keep them :)

Regular moms take their child's developmental milestones for granted.
Special needs moms realize what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc.
--From Kate

Regular moms get annoyed when their child won't stop talking.

Special needs moms would do anything to hear their child utter one word, 'Mom'.

--From Elizabeth

Regular moms love it when relatives wear out their children with play, thinking they'll sleep well that night.

Special needs moms weigh the choices: Allow rough-housing that will keep their child up all night and set back their behavior issues or disappoint well-meaning relatives who don't understand your child's disability.

--From Steph

Regular moms take their kids to birthday parties and gather to chat as their kids hit the pinata happily.
Special needs moms spend the party alone, watching their child open and close the sliding screen door repeatedly and trying to keep him from smashing the birthday cake or tear open the birthday kid's presents.
--From Amy

Regular moms have a list of emergency numbers on the fridge for the babysitter.
Special needs moms have a detailed spreadsheet of all doctors, specialists and therapists, with emergency family numbers way down at the bottom as a cheat sheet for themselves.
--From Jessica

Welcome to Holland

Though I'm not sure if Robbie is considered to have a disability technically, we know he does have a muscle disorder and developmental delay due to that and no clue how it will continue to effect him or where it will lead us in the future. This spoke to my heart.

By Emily Perl Kingsley. 

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."    

This & That

First Henry:
He is walking everywhere! The only time he crawls is if he falls down and needs to get to something to pull up or if he wants to get somewhere really fast.  His personality is coming out and this little boy knows what he wants when he wants it and lets you know too!  He is moving along with more foods and trying new ones out - he loves to eat. One of his favorite things to do is carry around his straw sippie as he walks then plop down and take a drink. Henry also loves playing with Robbie and trying to copy what he does : D  

Now Robbie:
First off we finally have his Developmental Pediatrician appointment. Unfortunately the soonest new patient spot they had open is in May so it will be awhile before we even begin with that.  

He has been sick for almost 2 weeks now. It is typical for kids with hypotonia to be sick longer and have a harder time fighting stuff off but he is doing his best. Prayers for complete recovery appreciated.

Last evening and today are the first we've been out since he got sick. We took a walk down to the park and there was a little girl about 4 or 5 there playing too. He ran over and since she was doing his favorite things (pouring sand on the slide) he joined in. After several attempts the little girl finally talked him into following her up to the high slide. They went up and slid down over and over and over! He did great!  It took him twice as long as her to get up there and he crawled all the way up the first 3 or 4 times but he eventually started carefully walking up while holding the rail.  We were so proud of him!!!  He really over did it and got too worn but they had a lot of fun  :) Such improvement!

We are still on the wait list for Speech but he has had a speech explosion like he's never done before. Usually he will gain a new word and say it over and over a lot but during Christmas, and then really accelerated on our trip in TX, that changed.  He is now saying things he used to only sign, using more signs and in conjunction with words, attempting to combine a few like "down please", and has added a plethora of new words!  Some of the things he is now saying (most don't actually sound quite like it or are the shell of the word but it still counts!) beads, wreath, hee haw, moo, hi, no, ho ho ho, teeth, tree, dino, see, go, up, please, Henry, me, carry, Dada!, cockadoodledoo, snack and many other things.  Mostly he tries to repeat much of what we say, so it isn't a word he regularly uses but is trying to say. Now when he asks what something is and we answer he will often repeat it back!  He is also carrying on fake conversations and earnestly trying to say stuff to us - very cute with lots of hand gestures!  He also has finally reached a point where he will come to us and say something but we have no clue what it is. He persists in trying to get us to understand though because he is saying it with meaning!  Often he will even find props to help us understand or take us to what he means.  

All of this is very exciting to us!!!!  Again thanks so very much for your prayers!