NJ has had a rough couple of weeks. He's been very sick and I'm so tired and worried for him.
First he was having nausea, vomitting and double vision. I was almost certain they were the further Chiari symptoms. He had no other virus like signs. It didn't seem to matter if he had eaten or not. If he was laying down perfectly still he was fine, but the second he moved around or got up he would feel dizzy and get sick.
He missed the entire week of school last week because of it.
Then the weekend came, and so did the fever. High fevers, as in 104 fever!! It was releiving and scary all at the same time. I mean, fever means it's not Chiari. Fever means infection- virus more than likely.
Unfortunately, the symptoms continue and he gets worse, much much worse. He does nothing but sleep. He's not eating or even watching tv, just sleeping. For NJ, this is certainly alarming.
Which brings us to today. After a trip to the Doctor on Tuesday we find that he has a perforated ear drum....yet again. He perforated the same ear drum just weeks ago. The Doctor seems to think he has a Cholesteatoma
What is that (!?) you ask? (I said the same thing) Well, the Doctor drew me a picture. From what I understand, it's an abnormal growth of skin that grows in the ear. It can cause lots of problems from infections, ear drum perforations, bone errosion, deafness, blindness, menengitis and worse... If he has a Cholesteatoma, he'll likely need surgery to remove it.
The cause? Well it can be congenital, but more than likely he got this as a side effect from having tubes in his ears as a baby. At 9 months old he got ear tubes from repeated ear infections. When the tubes fell out as a preschooler, the Doctors warned us that there was still a hole in one of ear drums from the tube. It had not healed closed. It was something to keep an eye on and might require a breif surgery, basically a patch over the hole. Well, we dropped the ball and never had it patched. (Forgot all about it actually!) The growth has probably been forming for a while now.
As if our plate wasn't full enough! He see's the ENT Doc on Monday and so we should know for sure soon. In the meantime, he's been on antibiotics since Tuesday and is still running a fever. He's missed so much school on top of what he's going to miss when he head to Chicago later in the month to see the Neurosurgeon for the Chiari.
Send thoughts and prayers please!!
.....Final Adoption post to come, I promise!
After the Adoption proceedings (Which I will share in my next post) we headed to Build-A-Bear Workshop so the Princess could Adopt a Bear of her own.
Unfortunately, she was very anxious and could really care less about being there. Part of it was her age, and the other is this huge forum anxiety she gets from being around strangers. She hangs her mouth open and is pretty much off in her own world. It took both my husband and myself to keep her on task choosing and bear, then stuffing it, choosing an outfit, filling out the Adoption paperwork. It was pretty stressfull actually, but I hope that someday she will look back and appreciate it. The bear (or shall I say Monkey) that she created will forever mark this special day.
Here are pictures...
...Here she is picking out a sound.
Stuffing her Monkey...
There's her classic "anxious" look...
She REFUSED to look at the camera. Sigh, oh well I tried!!
She was more interested in a new little purse for herself!
So much happened on Adoption Day I've decided to break it down into multiple posts. Right up till the end in which I have a recording of the court proceedings which took place over the phone via speaker phone. (Strange I know!)
First thing Tuesday we took her to the Pediatrician to get her ears pierced. Yes, they do that at the Pediatrician! I'd read many times in Parenting magazines and such that if at all possible you want to have your child's ears pierced at the Doctor. So I called, and sure enough they offered it. After some numbing cream was placed and I signed some paperwork, 2 nurses came in and well... the pictures speak for themselves:
I was pleasantly surprised they informed me that I don't have to take special care of her ears once pierced. Normally, you have to turn the earring every so often and clean it with Hydrogen Peroxide to keep it from geting infected. Well, they now offer a special medical grade plastic type earings. Plus, there are no allergies associated with these type of earings. Major bonus!!
Then we got "pink" Ice Cream by her request and went Shopping for a new dress. We stopped at a little Children's Clothing Boutique that I'd never been too called Lil' Dudes and Divas. I splurged on an adorable dress by cachcach Shhhh... don't tell hubby how much it cost!!! (Hey it's not every day you get ADOPTED right!?)
...more to come soon!
Court went on without a hitch. (Besides being delayed about an hour, but that seems par for the course!) I hope to share more about our special day tomorrow but for now I leave you with a video montage that I've put together....
Have you ever heard of Angel Flights?
Angel Flights help people in need of air transportation for medical appointments and treatment. They fly the patient and one other person (parent) completely free of charge. They are able to do so by way of volunteer pilots and donations from individuals, foundations, clubs and corporations.
We applied, and have been approved for Angel Flights to take NJ to the Comer Childrens Hospital in Chicago next month!
While I am extremely pleased, I find myself wondering if it will work out in the end. You see, you must have a back up flight plan. Angel Flights is not guaranteed. Meaning if there is any kind of bad weather, a pilot cancels or there is a problem with a plane, the trip could be cancelled. Last minute commercial tickets will be outrageous to purchase, which leaves me driving. Alone with a child all the way to Chicago. Yeah, it's just a tad bit scary to think about!!!
Yikes, pray for clear weather in Chicago on Feb 19th.
Tomorrow is the big ADOPTION day!!! Check in later in the evening for a special video presentation and pictures.
My head is pounding. After walking on air for the last few days (excitment over the Adoption date) I was suddenly brought back down to reality.
NJ's Neurosurgeon in Chicago requested we have a Swallow Study done before our appointment next month. So I put a call into our pediatrician here in Oklahoma City and told them what needed to be done. (I told them he needed a "SWALLOW STUDY" just as it was worded to me) I also made sure they have the name and number of the specialist in Chicago in case there were any questions.
His "Swallow Study" was scheduled for today. As I checked in, they verify with me that we're getting a "Barium Swallow"? Ummm?? I guess?? I tell them, we're getting a Swallow Study done. No one questioned me, so I assumed that Barrium Swallow is a different name for a Swallow Study.
Well, I was wrong. After the procedure was completed, the Pysicians Assistant tells me he swallowed the liquid just fine, no problems.
Liquid? Ummm... he doesn't choke on liquid. Just foods.
The PA then says there is another test, a Dysphagiagram that looks at the chewing and swallowing of foods and textures.
OMG, so I just payed for a very expensive procedure that we didn't need!?!? Somewhere in the communication between Neurosurgeon, Pediatrician and Hospital, someone screwed up. I'm not familiar with the Medical Name for these tests. How am I supposed to catch on to something like this?
My middle son, I'll refer to him here as NJ. He's 9 years old and has Chiari Malformation. (Pronounced KEY-are-EE)
"Chiari malformation is a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal."
Chiari Malformation has MANY symptoms, but here is a short list of the most prominent ones:
Headache and neck pain, dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet.
He was diagnosed with Chiari when he was about 4. At the time, the 2 Doctors we saw could not agree whether or not he needed to have Surgery or not. We chose to wait and watch him for worsening symptoms. We didn't see any until recently. For the past few weeks NJ has been having trouble swallowing. He chokes and gags easily on his food. If you watch him while he eats, you can clearly see that it's difficult to swallow. He chews, then slowly swallows while putting his chin down to his chest and squinting his eyes. The Pediatrician saw nothing unusual in his throat, no enlarged tonsils (because he doesn't have tonsils anymore lol) or redness. Turns out Difficulty Swallowing is a red flag symptom of Chiari though and so we've decided to take him in for a followup.
This time we're skipping uninformed, inexperienced Doctors and we'll be traveling to Chicago to see a Neurosurgeon at the University of Chicago Children's Hospital. He considered one of the BEST at Treating Chiari Malformation in Children. He knows his stuff, and we feel our son deserves to see the best. NJ will need all new MRI scans and the Nurses in Chicago are working out a plan so they can be done while we're there, just before he sees the Neurosurgeon.
So on top of this Adoption stuff, we are busy arranging childcare, appointments, travel and accommodation arrangements!
I'm very nervous about visiting Chicago. It's a huge city and I'm not familiar with mass transportation. Just reading the directions from the Airport to the Hospital had my head spinning!
I haven't heard a word from the Adoption Worker since last week. She told me by Monday we'd have a date. Here it is Thursday and still, not a word. So what's the hold up?? I want to call them so badly and ask! I just can't bring myself to pick up the phone. I feel like all we do is nag, bitch and complain. We are so close, I just can't figure out what the hold up could be.
I just want them to tell me a date. Confirm it for us. We need to begin planning. We'd like to have a big Adoption Party. Then again, maybe we'll just have an expanded Birthday Party? (Her birthday is later in Feb.) I wouldn't feel right having 2 big parties within weeks of each other. We need a date so we can decide if we'll be finalizing the Adoption over the phone (as long as the Judge approves it which is still up in the air) or if our large family will have to travel to Denver. The logistics of that, when/where/how long we'll stay etc etc etc....
I'm going crazy here. I just need a DATE darnit!!!!!
So call me impatient. I really am! I'll be the first one to admit it. (My husband is nodding his head furiously)
I couldn't just sit around any more. Not since I know how close we are. I didn't want our case to fall through any more cracks. So this afternoon I picked up the phone on a whim and called our Adoption Worker. She answered the phone right away and told me she had filed the paperwork TODAY at the Courthouse. She said typically she will hear back regarding a court date within the same day, but it's possible that the Clerk and/or Judge are still out on Holiday and we should hear something by Monday.
Worst case scenario? Our Adoption date will be Feb. 5th. She said there is a Permanency Planning set up for that day already and they may just do it then. She's hoping that's not the case and we'll get in sooner.
Heck, after all this time, I'm good with Feb. 5th!! If it comes sooner than that, WONDERFUL.
It's almost surreal. We're actually going to finalize this Adoption!
I'm struggling. I mean, really really struggling. I'm not sure if it's because my husband has been working 2 full time jobs the last 2 weeks (no exaggeration) and we've hardly seem him. Or maybe it's the Holiday Stress? Perhaps, it's just the fact that she's almost 3... I'm just at a crossroads and I'm not sure where to turn.
Her behavior can be downright ghastly. I'm tired and out of ideas. We're on the waiting list for PCIT. (Parent Child Interaction Therapy)for MONTHS now. They called us recently and offered us an opportunity. They were teaching Therapists the program and we would be the subjects. It was a way to get into the program sooner. It would have been wonderful had it worked with our schedule- but alas it dit not. So we were returned to the waiting list pool to wait our turn.
Our boys were pretty decent as 2 year olds, but 3 was awful. Whoever named the terrible two's was way off! I'd hoped that since 'The Princess' was so difficult at 2, that she would skip the terrible 3's. Now, it's looking like I am not so lucky in that department. She's only gotten bigger, stronger, louder and more persistent.
My sweet girl has some kind of insomnia lately as well. She just doesn't sleep! It takes 2 hours for her to fall asleep for naps... then of course she isn't ready for bed until 10pm. So we tried (much to my dismay) skipping naps all together. Well for some reason that just made it worse. She's up until midnight or later. Laying awake in her bed, talking to herself. Laughing, giggling and shrieking. There is no rhyme or reason for it.
Of course, it's very likely that sleep deprivation is tightly linked to her behavioral problems during the day... so what's the solution!?!? You can't MAKE a child sleep. My hands are tied as far as medication goes. I've already asked the Doctor permission to give Melatonin. (Something that our previous Doctor in Colorado approved for our son when he was having trouble falling asleep) Our new Doctor claimed to know nothing about it and didn't want to give her meds just yet. So I am forced to wait until the Adoption is finalized when I can make the decision to give it to her. (Since she's technically still a Foster Child we could get into big trouble if we gave it to her without Doctors permission.)