Hoping and Wishing and Thinking and Praying.

So tonight and tomorrow will be the tough.

Tonight they once again try him on a new medication to ease the tics and they couldn't come soon enough. When he gets upset or angry he smacks his head, HARD. Over and over and over again til he's crying but, he still cannot stop! If it's not that he'll claw at his arms and legs over and over and over again! If one more person tells me it's attention seeking behavior though, I may loose my marbles. Attention seeking behavior is behavior designed to get or maintain attention. When your child is doing it alone in his room because a toy is frustrating him, without calling for help or making a big deal out of it over and over again and doing it daily, it is not attention seeking. It is a part of the whole lovely package that goes with having TS child. So, I hope that this medication works for his level of tics and can bring them down like the last one did.


Tomorrow, is the ENT followed by the ear molds....I'm VERY worried about this. I don't know how he'll respond to the ear mold process and the feeling of something not only in his ear but, essentially blocking the hearing almost completely in one ear and then the other. I'm scared of how this will go and if he looses it, I don't know that I can calm him down enough for another ear. I really hope it goes well.

I've found a couple videos online that show him pretty much what the ear mold process is about and roughly how it will feel. Though, as I've never had one, it's not exactly easy to explain!! I wish it was done and over, that's how worried I am! I'm just praying like the dickens that this goes over well tomorrow and that if there are going to be any side effects from the meds that they do not interfere with tomorrow morning!

The sorrows of when a medication works....

Feeling a tad low right now.

DW was taking a new medication that works well in patients with TS. It was amazing and showed me my son again!!!

It has been years since I've seen his amazing, blue eyes, without the dark circles half way through the day and the exhaustion from the constant blinking. It's been ages since I've seen his beautiful smile without his face contorting from his blinking. It's been months and months since I've heard him be able to calmly finish a sentence, without chronically ticing. Even his the sniffing, that sounds so painful, like his nose may explode or a vein may rupture somewhere was so mild, that I might not even have noticed at all, except that I was looking for it. Every tic he had slowed to a crawl! A minute or more in between each one! It was like seeing him again for the first time....

Which was such a blessing, it gave me such hope a life for him, where he could function on a more normal level. As if having ADHD, OCD, SPD and hearing loss would really be "normal". Yet, if there could be a chance that he be accepted for just those things and no tics....

Well, true to any medication that seems to work for him, like Focalin for example. It was a great medication for his ADHD. It really worked well. Within a few weeks though, it aggravated his Functional Abdominal Pain. So, we switched out that med for something like his fourth ADHD medication. Every time something works and shows such promise, something in his body reacts.

When he came to me in the middle of the night the other night, and had wet his bed. I was shocked but, thought maybe the new medication had made him overly tired. When he woke the next morning and almost vomited, I knew that this could be a side effect but, he didn't actually do it. So, I thought we'll try again this morning. Late last night, he came out of his room and had not only had diarrhea but, he'd not been able to hold it til he got out of bed. He cried as we stripped his stinky clothes and redress him. This morning when he almost made it and slightly messed himself. I knew I'd have to stop the medication. Some the very rare side effects, where urinary and bowel incontinence, along with the vomitting and and dysphagia he'd told me he'd experienced before bed.

So, as he stood here shortly after lunch trying to tell me something about a toy, and he blinked, blinked, blinked, sniffed, hissed and upon exhale did his unhh unhh unhh, it was all I could do to not cry. It hurts to see him like that so very much, maybe more so because for a few days I saw him!! I saw my baby boy!!

Yet, despite how much it's disheartening, and as I type this now, the tears come down in droves, I remember that for a few days....a few days I saw my boy as he should be, without the struggles, exhaustion and pain that TS tics inflict on him. I saw able to sit still without the twitches. I saw him!! It gives me such hope to know that maybe there can be a new medication that is tolerable for him, that one day my sweet, little, angel boy will be able to have a life with less tics.

Three Signs of a Good Day!

First sign: DWs first dose of the new meds to help control or lessen the tics he has is down. Though I know it's fairly early to say this but...I'm trying to be CAUTIOUSLY optimistic! His tics have slowed to a crawl!!! Though it could be a very, very odd coincidence, I doubt it. It's been years since I've seen my son's face not contorted in a grimace from the blinking or wanted to scream from the NON stop verbal tics! I've become a pro though these last two years and know that I will not count my chickens til they've hatched. Meaning that I will wait it out before getting excited, see if there are side effects or if he adjusts as he always seems to do to new medication, especially when it's shown promise!

Second sign: I've gotten soo many responses from mothers with HOH or deaf children! DW has been invited to playdates, even picnics! I've got an appointment with the Nebraska Commission for the Deaf and Hard of Hearing to get the process rolling to get the device that will flash the lights when the phone rings. My husband would love this immensely! So, will I!! The lady there has already started looking for family ASL classes, though most likely I'll be the only one who can attend and will have to teach DW and his father! : ) We've been given a number or two to help with both funding to get my husband's cochlear implant for his one ear and two places to talk to about getting him hearing aids that are more suited for his kind of deafness!

Third sign: DW has SPD and is highly resistant to new textures or feelings. The thought of needing a hearing aid and having to have two, REALLY bothered him!! I've shown him numerous videos of kiddos getting aids, pictures of what his aids might look like. I called the audiologist lady so that he could be assured that his aid would not be white, as he's an aversion to white. Today he started talking about when he has his hearing aids this and that and if something is too loud how he's going to shut his ears off! lol When is he going to get them, etc. It was really a good thing to see. Now if he'll stay this way, is beyond me but, for today, it's a good sign.

Just wondering or rambling how all this happens in one child.

In light of all that has gone on with DW, I should just take it all in stride by now. Five years, almost six now of one thing or another. His nose defect and the two surgeries to correct it all before he was one month old, the SEVERE MSPI (milk, soy protein intolerance) and failure to thrive diagnosis. The NG feeding tube he had for ten months, the loss of muscle mass and abilities to move his arms, legs, head, etc. Followed shortly after the list of acronyms or diagnosis that follow his name most of the time.

I thought, this has to be enough. That is all that a kid could endure really. It is all he should have to endure! When they told me from birth til a few years ago that certain tones were inconclusive, they were unable to determine if he could hear them correctly, I knew that there might be a chance he would get the familial hearing loss that runs in his father's family. In fact I remember being almost certain he had it. It's just that around a year ago or a bit loner really, when they gave him the TS diagnosis, I REALLY didn't think that there would be another thing to add to his already growing list of issues. I didn't think that this would happen. Even after his geneticist told me all these years that bilateral choanal atresia never comes alone and is indicative of other issues, I still just thought that his plate was full. That it wouldn't happen.

So, when they told me earlier this week that he had his father's and grandfather's sensorineural hearing loss, I felt terrible. I knew halfway through the test though. When I could hear the tones and he would either hesitate greatly before responding or he'd just simply not react, my gut just sank. Still a serious part of me fully expected to walk out of there and them tell me he was fine. I mean he's just a boy and with all that he already had on his plate...

I've done the mom thing, where you do the denial, you get angry, the crying your eyes out thing and then the research and acceptance thing. All within less than a week this time! :) I'm getting better! Truthfully I'm still somewhere in between the crying my eyes out and the acceptance stage. It still KILLS me that he has to do all this, my little tiny man, and though I can advocate for him, learn all that I need to help him and things that he may need to know, be there when he needs me, but I cannot fully understand how it must feel to be in his body and I cannot take it from him. Though I'd give anything to do so.

So, for now I'm settling for organizing playdates with other hard of hearing children and their families. So that he can see their aids and how they are and he'll maybe get used to the idea of having two aids and he'll see that it doesn't bother those other boys and girls. He'll see that they are normal and do things just as he already does. This is what I did when he was diagnosed with TS, sought out a support group to ensure that he'd see others like himself and know that he was really ok. It is all I can do right now and while everyone is marveling at how much I'm trying to do for him (which irritates me slightly), its not the accolades that I want, it is simply that my son be ok and well adjusted. I know that his self esteem right now is something that I can do something about as he ages, I know it will soon be out of my control but for now, I will do whatever I can do to make sure he can at least start out in a good place.

New medicine

Just when I think things are getting better, DWs tics hit this weird cycle. Where he upswings and downtime are rapid cycling! His tics are so bad in an upswing, that he's physically unable to finish a sentence! And he's picked up 3...yes THREE new tics in two weeks!!! Of course they are all vocal too, which even the best TS mother will tell you can really try a person's patience!

On top of this, though I'm unsure if it's a tic or not, he's taken to smacking his head so incredibly hard when he's really upset or being reprimanded. Everyone's immediate reaction to this is that it's an attention seeking behavior but, you'd have to see it to understand. He does not look at a soul when he does it, he repeats it several times and will even cry while doing it. It's quite painful to him. I've treated this as I do any other tic and paid it no mind but, the fact that he's doing it til he cries, it's very hard.

Talked to the neurologist here, who specializes in TS. He said its time to treat DW's tics....I knew deep down that we'd get to this day but, to have to hear it out loud, my heart broke yet again. So, he'll be started on a medication that has apparently worked well for other TS patients with severe or self harming tics. I'm quite nervous for some reason this time. I just hope it helps and like all of the medicine they give him does not make him too terribly tired.

Hello

So, I guess I should start my first blog by introducing myself. : )

Um, I'm a SAHM of two boys and stepmother to another boy, who resides in the most part with his mother.

My youngest son, now almost 2yrs old, has just recently been given the diagnosis of CAS: Childhood Apraxia of Speech.

My oldest, will be 6 at the end of November, has sensorineural hearing loss (genetic in nature), TS (Tourette Syndrome), ADHD, OCD, SPD (Sensory Processing Disorder), anxiety disorder, etc.

The oldest, DW, is in OT and PT 3 - 4 times a week. JD, the youngest has just finished his first week in ST. He goes 3 times a week. He will need PT and will be getting qualified for it sometime next month. DW sees a psychologist once a week to help with the TS/ADHD rages and OCD issues. He also has a neurologist and developmental behavioral pediatrician that he sees monthly or bi-monthly. He has a geneticist, an ENT (specialist in cranial facial surgeries and issues), a GI doctor and his regular pediatrician. Then you throw in JD's hearing tests every 3 - 6 months and life in our house if usually revolving around therapy or doctor's appointments!!

DW was first diagnosed with SPD at just under 3 years old. OCD was the diagnosis given to him at age 3 as was ADHD. By not quite 4 the tics we'd spent the last two years, chalking up to sensory issues, allergies, etc were undeniably not coming from those issues. The sniffing, blinking, odd breathing noises, constant tugging on his clothes, arm/shoulder jerk, swiping at his nose, etc were no longer mild or in anyway dismissable.

That was our life. Full of meltdowns, medications, various therapies. Then came the dreaded audiology exam. DW's father and grandfather has familial sensorineural hearing loss. So, when as a baby, there was a VERY mild problem in certain tones, it was no surprise. This year's exam though...showed that bilaterally his hearing loss was mild and in some areas, came close to being moderate. It was my choice to do hearing aids or not....when they let me hear how he hears, it was all I needed. He's being fitted for molds next week.

JD has just started his ST therapy a week ago. So, the CAS diagnosis is also new and added to the hearing loss that DW has, it's worrisome. JD's hearing exam was inconclusive in the lower tones, which gives me no comfort.

So, now we add yet another chapter to our lives. Another layer to this crazy cake. It is devastating, it is hard, it is crazy, it is full of tears but, it's priceless, the moments where the light shines in is blinding! It is full of laughter and silliness as you learn to never take a thing to seriously.

I'm just hoping I can hold on tight enough and NOT mess up! :)