Friday, April 19, 2013

It's Been a Week...

It's been a week since Little Man was diagnosed...I still feel overwhelmed because I have so many things flying around inside my head. 

On Wednesday we saw his pediatrician.  We went to see if he has a murmur and if we needed to see a pediatric cardiologist.  His doctor heard what is termed as a venous hum; however that's not say that there is a murmur or not.  So we are going to have to go and see the pediatric cardiologist to be certain that everything is okay. 

On Thursday we saw his pediatric GI doctor.  This was just to check in and see where things are in regards to his reflux and constipation.  We also discussed the additional diagnoses that he's received and the results of his swallow study.  We now go back in 12 weeks for another follow-up. 

We finally have an appointment to see the pediatric ENT at the end of May.  I hope that he has some answers for us.  Hopefully he can tell us what will happen and if he'll need surgery to correct it. 

Now as for Precious Butterfly, I haven't forgotten about her.  We actually have more going on with her too.  She was evaluated a week ago by early intervention (EI) and it was discovered that she qualifies for speech therapy both her expressive and receptive speech is approximately around 12 months of age.  So today was her first speech therapy session; luckily we got Little Man's former speech therapist so everyone is comfortable.

During my talks with the child developmental specialist about Little Man I mentioned how Precious Butterfly has had a speech regression and getting her in to see the developmental pediatrician sooner rather than later.  We've been waiting since February for an appointment after she failed the MCHAT at her 18 month check up.  The developmental pediatrician wants to see her during the regression.  Now I have learned from what little research that I've done, that there is a genetic component to Autism, her failing the MCHAT has set off a red flag for possible Autism; we are seeing the developmental pediatrician May 1st I am looking forward to seeing what he has to say about her.

You may be wondering how hubby and I are handling this...well...I can say that it is hard to digest all of his diagnoses, but I am relieved that we finally have answers to what we've been going through with Little Man.  Hubby hasn't fully had it sink in...however, I think that's because he's torn about being with me for the appointments and being at work.  It's pretty much my job to do the research, inform him of what I discover, keep him posted regarding appointments, and answering his questions as best I can.  Luckily my family is being supportive through all of may be wondering about my in-laws, well there's not too much to say.  We informed them a week ago of the diagnoses and all that my father-in-law said was "wow" to each thing we said.  We really haven't spoken with them this week about all the appointments we've got/been to.  I have a feeling either my father-in-law will call hubby tonight or at some point tomorrow.

I hope that as a family we can get through this and adjust accordingly to what each of my babies need.  I plan to post as often as I can, but sometimes I get distracted and don't get to sit down at the computer to post.  I plan on posting at least once a week if not more.

Even though it's Friday, next week is April vacation...that means Little Man will not be going to preschool...let's hope that we have a good week.

Sunday, April 14, 2013

I Didn't Expect This...I'm Overwhelmed

So I'm sure you've read the previous post...Little Man has had a lot happen in the few days.  It's a shock, but we're dealing with it and I'm trying to process it so I can help others understand my unique Little Man. 

He was seen Friday morning for a modified barium swallow at Concord Hospital.  Unfortunately he now requires his liquids to be thickened to honey consistency.  His epiglottis (the flap that flops back and forth between covering the windpipe versus the esophagus, depending on if you're breathing or eating) is anatomically incorrect/abnormal.  I don't know the specifics or the specific diagnosis for it, but now we're waiting for a referral for a Pediatric ENT.  The feeding and swallowing specialist for the SMS (Special Medical Services) told me that she'll be coming over in a couple of weeks to go over the DVD video from the visit and explain things to me.  She also will get a written report to me at some point in the next week.  The prescription for the thickener was sent, but unfortunately nobody can fill it and by the time I was notified, it was too late.  I've called every pharmacy in the area and they can't fill it.  So Monday morning I have to call one more and ask for it to be special ordered, in the mean time I have to thicken his drinks by using applesauce.  The ratio is 4oz of juice to 8oz of applesauce roughly, I just add applesauce until it roughly appears to be as thick as honey.  This alone has been difficult.  We have a follow-up visit with the Pediatric GI Thursday to discuss the results of the study and where we go from here.

Then to top it off, Friday afternoon we took a trip to the CHaD Child Development Center.  We got shocking news and a diagnosis.  Little Man has been diagnosed with an Autism Spectrum Disorder (ASD), hypotonicity, and transient alteration of awareness.  It came as a shock...even more shocking the doctor heard a murmur and we have to see his pediatrician for a follow-up to it and see if we need a referral to see a Pediatric Cardiologist.  We also will be having an overnight visit at CHaD for a prolonged video EEG to see if he has seizures/to rule out epilepsy (apparently children who are autistic have a higher risk of epilepsy); Little Man has these staring spells and that's why he's been diagnosed with the transient alteration of awareness (he actually had one during the visit with the doctor).  After the electrodes are removed, they'll do a blood draw and check him for a few other things.  As for the murmur, it could be indicative of a vascular ring or sling and they need to be ruled out.

I think about Little Man and his diagnosis along with the other things that he has and it just brings tears to my eyes.  I know that I need a good cry to help cope, but I just don't have anyone that understands what I'm going through.  My friends don't know and frankly talking with them isn't really an option.  Then there's my family, I know they mean well and all, but they don't understand how I feel and what is happening.  In my mind he's still my little boy and will always be my little boy, however, I can't help but wonder why this is happening to him and to us.  My in-laws, however, appear to be stunned/shocked by this diagnosis and don't really know what to say.  I have a strange feeling that I will be answering and doing a lot of explaining to them so they understand it.  

I have a friend from church, well actually a former classmate's mother is a friend of my parents and someone I consider to be my friend.  She knows what I am going through and is there for me.  She's offering to help me learn to best advocate for Little Man and provide some additional resources/contacts to help be sure I do all that I can for Little Man.

Then my Saturday didn't start out as I would've liked...Little Man was up at 6:45AM screaming and crying...he was pointing to his throat and saying "boo-boo."  I told him that as soon as the doctor's office opened I'd call and see if they could see him.  Well I called and informed them that he was complaining his throat hurt; they got him in pretty quickly and during the exam the doctor asked me if his ears were bothering him...come to find out the rapid strep test was negative and they were culturing it too.  Then the doctor did send a prescription for amoxicillin to the pharmacy, I had no idea why so I asked and the doctor informed me that he had an ear infection.  So I'm just a tad bit on the tired side due to lack of sleep. 

Saturday, April 13, 2013

Time to get caught up...

So I know I haven't blogged in a while, but things have been super crazy and frankly I haven't had the time...between my kids and reading books I just haven't had the time nor the energy to hop on the computer and post.

Christmas was crazy, but when isn't it?  The kids had a good Christmas and enjoyed being with family.  Even though we see everyone pretty regularly we still enjoyed spending Christmas together.  Both hubby and I enjoyed seeing the kids open gifts from everyone.

Then back in February Little Man celebrated his third birthday!  It was a small intimate gathering with family and a few friends.  We actually hosted it at our home rather than my parents' place.  Little Man had a good time; he chose Cars for the theme and for his cake. 

Easter was pleasant.  Instead of my parents hosting a dinner, we went out for breakfast as a family and I hosted an Easter dinner for my in-laws.  I went with a ham shank, green bean casserole, steamed corn, and roasted red potatoes.  Everything, but the green bean casserole were safe for Precious Butterfly.  Everyone had a good time and the kids got baskets filled with different goodies.

That's pretty much what's been going on since the last post.  There are more things to discuss that have occurred in the last 24 hours, but I'll save it for the next post.