Medical Update: Chronic Fracture NOT Infection

After that last post I finished packing us for a two night, two day stay at the hospital and headed back. The hospital only allows one parent to sleep in the room and there was no way the wife was going to leave the wee-one's side so I drove back home. I got home around 1:30am fixed myself some left-overs and spent about an hour just decompressing before I could sleep.

The wife called for reinforcements around 5am. They had not been admitted and were still in the ER. Fortunately, Annie got a good night's rest. Unfortunately, the wife and I had only about 2 hours sleep and we were thoroughly thrashed.

As luck would have it, Friday mornings the entire Ortho team meets to discuss cases and ours was the headlining act. They reviewed the xrays, blood work, MRI and our entire case history. They decided it was most likely a chronic fracture of the heel bone but they wanted to take a bone-marrow sample to be sure.

This is one of those weird catch-22 moments when we are so glad Annie doesn't have any feeling in her legs - of course, if she did, we probably wouldn't be in this situation in the first place.

The docs jammed a needle into her heel bone and the marrow came out normal-looking (no pus). So they officially labeled it a fracture, casted her and discharged us with apologies for the long night. We packed up all our gear that I needlessly packed in the middle of the night and headed home.

They will do a culture on the marrow to officially rule out infection but the results won't be back for a week or so.

So just to recap:

- 18 hours overnight in a crowded ER
- 3 round-trips between home and the hospital
- 2 days of gear pointlessly packed, loaded, unloaded, loaded and unloaded again
- Two rounds of xrays
- Blood tests
- MRI
- Bone marrow drawn
- Bone infection - no, wait, fracture
- Mom and dad delirious on 2 hours of sleep tag-teaming a four-year-old today who has had a full night's rest
- The house is a wreck and the CHRISTMAS TREE IS STILL UP

But in the end we are grateful. Cast beats scalpel every day of the week.

Thanks for your prayers and well-wishes.

Medical Update: Bone Infection

When the wife brought Annie home from school today she immediately noticed something wasn't right. Annie's left ankle was hot, swollen and tight. Of course Annie can't feel her ankles so she was otherwise in good spirits.

When Annie fractured her right tibia some time ago and then her left femur some months later, the symptoms were exactly the same, swollen tight and hot. It seemed pretty obvious to us that Annie had fractured her left ankle at school today.

Once at the ER, we were sent for Xrays of her ankle. The films didn't show a fracture. The docs ordered blood work which came back indicating the likelihood of an infection. Orthopedics was called and they sent Annie for an MRI. Then it was back to radiology for an Xray of Annie's tibia that she had broken earlier.

By now it was 10pm and we had been in the ER for 6 hours. Once again, dear friends came to the rescue with dinner for us. The docs believe that Annie has an infection in her heel bone that will require surgery tomorrow and a second night's stay in the hospital.

I am scrambling at home to pack up overnight bags before I head back to the hospital.

We will keep everyone posted as we are able.

Tomorrow is "Go Annabelle" day.

Sport 'em if you got 'em.

Your prayers are appreciated.

UPDATE HERE

"Medical Update"

Two medical issue updates:

First:

So I took Annie in for her 6 month eye exam and the doc turned to me and said, "She has your eyes, dad". Which I have heard before (the wife is always saying she has my eye color). "Oh, thanks, doc", I replied. "No", he said, "She needs glasses". Turns out everything Annie sees, near and far, is blurry. This is no surprise. Everyone in both mine and my wife's family wears glasses . . . almost . . . Kiddos with SB are more prone to vision problems as well so it was only a matter of time.

I called the wife and let her know. She took it hard. Which is surprising since my wife has been an optician for 12+ years. Which just goes to show how unpredictable the emotions of a special needs parent can be. But the wife rallied and put out a world-wide call to her industry buddies.

As it turns out, a dear friend of ours is currently a sales rep for Swissflex, who makes one of the most highly regarded lines of kids glasses on the market. He was going to be in town last week and he would love to come over to the house for lunch (and bring his sample trays). So Annie had a private fitting with an eye wear rep to try out some new specs.

Here are a few that we tried (Annie is staring off in the same direction b/c we bribed her with a video while we tried on glasses):

#1

#2

#3

#4

#5

I left it to the wife to decide but my only request was subtlety. I just think Annie has such a beautiful face and I don't want it hiding behind a pair of specs that "make a statement". Not yet, anyway. Which is your favorite? 

The Second Update: This is the really tough one . . . .

We are positive Annie is left-handed . . . Oh the HUMANITY!
 

Medical Update: Kyphosis and Broken Femur

Most people are familiar with scoliosis - when a spine bends side-to-side instead of growing straight up and down. Fewer people are familiar with kyphosis which is like scoliosis only the spine bends front to back. Annie was born with a kyphosis. In her case, her spine bends outward from her back so there is a bony bump just below the center of her back.

(I was going to post an Xray but my scanner won't work)

The doctors told us when she was born that this would most likely get worse and eventually require surgery but the key is to put off the surgery as long as possible. There isn't much that can be done aside from making sure Annie sits up straight in her wheelchair but, of course, she does not spend all day in her wheelchair - she is often on the floor army-crawling, tumbling and playing as three-year-olds do.

Well this past Monday we went in for our 2-year kyphosis check up and the curve has gotten worse. The doc wants to see us back in 6 months and he estimates that corrective surgery will happen around age 5.

It's a real drag to know that there is something wrong with your child's health and that it's worsening and there is nothing you can do about it (even if you knew this was coming).

To top it off, Holly noticed on Wednesday that Annie's left thigh felt swollen and warm. There was no discoloration so it was something of a mystery. Naturally, Annie wasn't having any discomfort as she can't feel her legs. When the swelling and heat did not dissipate, we took Annie in to her pediatrician. Xrays showed that Annie has a crack in her left femur.

(again, my scanner is not working)

There are no signs of trauma (bruising etc.) so most likely Annie just turned the wrong way and it cracked. The doc explained that a cracked femur is often called a "Toddler's Fracture" because it occurs so often in toddlers. The doc comforted us by explaining that his own able-bodied daughter had a toddler fracture just from jumping up and down and with Annie's leg bones being less dense than most, it's not surprising that this happened. So Annie is now sporting a hip-to-toe fiberglass cast for the next three weeks.

I know that no parent has complete 100% control over the health of their child but these two blows back-to-back this week have had the wife and I pacing the house at all hours out of sheer adrenaline fueled by worry, frustration and a little despair.

So that is the latest.

Thank you for your continued prayers and support.

Medical Update: Cognitive Evaluation - 6/17: Part 2

It is also important to remember that these evaluations are just a snapshot in time. So, based on all the evidence given on Friday morning, June 17th, 2011 between the hours of 8:30am and 11am, having had a light breakfast of toast smeared with peanut butter and honey . . . you get the picture - these things are not exactly etched into the side of Stonehenge or anything (see me skillfully talking myself down off the ledge there?).

The good news: not autistic.

We had sorta noodled this one out on our own over the past month and so, while it was a relief, it was not a surprise.

Next, the no news: Annie has cognitive delays.

This is not really news to us - we knew she was delayed in certain areas such as speech and these evaluations are all part of the process of narrowing down some specifics concerning her development.

The "bad" news: Annie's cognitive delays are significant enough that the county is willing to give some of our tax dollars back to us in the form of additional therapy.

More "good" news: Of children significantly delayed, Annie's case is classified as "Mild"

To a parent, this is sort of like saying, "The bad news is your daughter was injured in a car accident. The good news is, compared to the other people in the accident, your daughter was injured the least."

Soooooo . . . . Yay?

There is a label that went with the findings - it turns out Annie is an Otter. I know. We were disappointed too - we had always hoped for a Golden Retriever but we are bound and determined to not let our wee-one be defined by labels.!

Actually, the label was something that made the wife want to "Put my fist through the wall" - but these things change, nothing is set in stone - Annie has a lot of growing to do yet and the county wants to do all they can to help. So . . . yay?

The school district wants to evaluate Annie in two weeks and these things are starting to feel like a game of Russian Roulette. We treated ourselves to a much deserved but slightly out-of-our-budget lunch after the appointment today and as we sat there we both felt like we had been "drug through a knothole backwards" as the saying goes.

Annie of, course, giggled her way through lunch and is now napping peacefully.

And that gets a definite "YAY!".

Thank you once again for all your prayers and support.

Medical Update: Cognitive Evaluation - 6/17: Part 1

First off, thank you to all those who have been praying for / thinking of and pulling for us today. We really wanted to make sure that this eval was accurate as possible and I think it was.

Annie slept through the night, woke up cheerful, had a good breakfast and powered through 2 1/2 hours of observation, poking and prodding.

The first 45 minutes or so, the therapist played various problem-solving games with the wee one - hiding toys under washcloths, placing toys in clear Plexiglas containers some short crossword and Sudoku puzzles (okay, I made those last two up).

The rest of the almost two hours was spent letting Annie do her own thing while the wife and I answered about 543 questions. Fortunately, the wife and I were in agreement on about 98% of our answers so that felt good.

Each game played gets a point value, every answer to every question gets a point value. At the end all the points are added up, checked against a graph and your wee one is branded on the bottom of her left foot with a label for the rest of her life. Not really.

It is sort of like those personality tests that determine if you are an Otter, Golden Retriever, Garden Slug etc. No one description ever fully encompasses anyone - but WE MUST MEASURE SO WE CAN LABEL. And, we must label so the county can decide if they want to give more of your tax dollars back to you in the form of therapy for your daughter.

To be continued . . .

Group Speech Therapy Update - 6/9/11

So Annie had her first Group Speech Therapy yesterday. Like you, we had no idea what Group Speech Therapy for toddlers would entail. Basically, it's 50 minutes of pre-school-play-time Boot Camp.

There are no more than four children per class and each child has at least one parent there. The hurricane of activity is wrangled by the Therapist (Speech-Language Pathologist) with her assistant following close behind alternately setting up the next activity and cleaning up the last activity.

There is a set schedule for each class:

1) 15 Minutes Structured Circle Time: We begin by singing the take-your-shoes-off song and then everyone sanitizes their hands. There are songs and toys and every toy has a purpose and every song has movements with a purpose. For example, there are these vibrating wands that the kids are encouraged to rub on their legs, and arms and tummies - eventually rubbing on their face and mouth all of which is to progressively stimulate oral/vocal awareness.

2) 10 Minutes of Large Movement Activity: This can be a see-saw, swings, bouncing on an exercise ball etc. - all of which have been set up in the "Gymnasium"

3) 15 Minutes of Sensory Play: This is where things can get messy and we are encourage to wear clothes that we don't mind getting gooped up. Yesterday they squirted mild shaving cream on a table and handed out little plastic people and dinosaurs to play with.

4) 10 Minutes of Wrap-up and Good-bye: Clean up, more songs, putting on shoes etc.

All throughout, the adults describe EVERY LITTLE DETAIL of what the toddlers are doing - "Put on", "Take off", "Fall down", and so on.

Our therapist was fantastic. One of those people who just seems to have a smile plastered on her face 24/7 but not in a disingenuous way. Afterwards I said to the wife, "I'm exhausted - how does she do this all day?". "I don't know", replied the wife, "But she sure seems to love her work."

And I believe she does. If your toddler needs to be in Speech-Therapy Boot Camp, she's just the person you want as your child's Drill Sargent.

Go Annabelle Day - Friday, June 17th

It amazes me that we have not had a "Go Annabelle" day in about two years. For those who are not familiar, "Go Annabelle" was the brainchild of a friend of ours.

In the past, Go Annabelle days have involved surgeries or doctor's appointments that make our parental knees shake. This go-round it involves a cognitive evaluation.

About a month back, one of Annie's therapists raised a concern about autism.

It has taken us a month to work out the insurance kinks but now we have the eval scheduled for 8:30am on Friday, June 17th. It's a two-hour deal where specialists interview mom and dad and observe Annie. The goal is to get a comprehensive evaluation of the wee-one's cognitive abilities.

I have no idea how a person might evaluate a two-year-olds cognitive abilities but I imagine it is something like trying to nail jello to a wall.

So our prayer request is for ACCURACY. We need Annie to be her normal, average self - not extra happy, not extra grumpy, sleepy or spastic. We are praying that the medical folks are at the top of their game as well. If Annie needs behavioural therapy, we want that to be evident, if she does not need it we want that to be evident as well.

In short, we need a "Go Annabelle" day.

Sport 'em if you got 'em.

Thanks for your continued prayers and support.

Annie's "Weekly" Roundup

So we have had a lot going on around here as far as Annie is concerned. A million small things that add up to hours and hours each week of paperwork and phone calls to doctors and insurance companies and medical supply companies.

Insurance: Annie has primary insurance through Cobra but we just got her secondary insurance through Medicaid finalized. This is a great relief as it provides a safety-net when our primary insurance acts like pin-heads. In addition, we received secondary DME (Durable Medical Equipment) coverage through California Children's Services (formerly Crippled Children's Services - anyone want to guess why they changed the name? Anyone?). This is great news as it provides an additional safety-net for things like wheelchairs, catheters etc.

Mobile Stander: This is our most urgently needed piece of equipment. Even though Annie doesn't move her legs, it is really important for her to bear weight on her legs to develop a healthy bone density; otherwise the bones in her feet and legs could become brittle. A mobile stander is like a wheelchair that you stand upright in; straps provide the support she needs to help her do weight bearing. Thanks to a combination of Primary insurance and CCS, we should have Annie's mobile stander in 2-3 weeks!

New Wheelchair: Again, thanks to primary insurance and CCS, Annie's new wheelchair is on order. It is customized to her current measurements and she will have room to grow. It is a "rear-wheel-drive" wheelchair as opposed to the "front-wheel-drive" one she has now which is important for her development. Did I mention the whole thing is coated in awesome glow-in-the-dark paint?! We should have it in two to four weeks.

Speech Therapy: If you have been reading recent posts, you know this is a big concern of ours. Annie is schedule to start group therapy once a week starting a week from next Wednesday. We are still working on scheduling her for once-a-week individual speech-therapy sessions.

Cognitive Evaluation: Again, those of you who have been following along recently know that one of Annabelle's therapists has raised a concern that Annie might be autistic. We are working on scheduling a comprehensive evaluation that may give us some more definitive answers.

Autism Specifically: After doing some more research on autism, we really don't believe that Annie is autistic. That being said, she exhibits enough autistic symptoms that I can see why a therapist might question it. If Annie is diagnosed as autistic, I would expect her to be a boarder line case. We are still anxious but feeling better than we did initially.

Mom and Dad: There was once a time when the wife and I were both employed full time and making good money. Since the wee-one hit the scene, we have had many discussions about child care and which one of us should work when and how much etc. Looking at the looming schedule of two PT appointments a week and then 2 speech therapy appointments a week (not to mention starting 3 additional Early Start appointments a week in the fall) we are coming to the conclusion that we can't both work on the same day. The only way to manage all these appointments is for either mom or dad to be home each day. The idea of doubling and tripling up appointments on any given just doesn't work as Annie gets a full-on workout at each and she would never stand for double and triple headers. So that throws any future plans into a whole new light for us.

So that's the latest. I know this was long but believe me, it was a summary. Please keep us in your thoughts and prayers and we will keep you updated with news.

Blessings and thanks.

Oh, Snap . . . Part 2

I think I have circled the emotional wagons on this latest episode but I won't lie - I think about it ALL DAY LONG . . . I'm just not lashing out at people and God as much this week.

We should hear by the end of next week when Annie's evaluation will be - we may have to institute a GO ANNABELLE day for this one - I will keep you posted.

I took Annie to a PT appointment yesterday and was sharing with the therapist that someone in our medical "team" had used the "A" word. She got very quiet and said, "Well, it's not a diagnosis yet and there are infinite levels of autism". I told her I was having a really hard time dealing with it and she looked at me as one who has talked with many parents before me and said, "I'm so sorry".

Of course, that's when Annie got frustrated with her exercises and started slapping her own forehead in frustration. "Whoa!", exclaimed the therapist and she looked at me and we were both thinking the same thing damned thing. If Annie had done this last week in therapy, we would have thought, "Huh, that's weird". But now that the "a" word has been spoken, the response has changed from "Huh . . " to "Whoa!".

Of Course . . .

- Annie is still the bright beautiful wee-one we have always known her to be
- We love and adore her as much as ever
- We don't have a diagnosis so we shouldn't get carried away imagining boogy-men

However . . .

Being a dad trying to keep perspective on all this feels like trying to hold back the tide with a spoon . . . and it ain't as easy as it looks . . .

Please keep us in your thoughts and prayers.

Oh, Snap . . . Part 1

Yeah, I snapped. I snapped in a way that I have not snapped in over two years.

While the wife has her own thoughts and feelings I will let her speak for herself. For my part, I am just sick and tired of having life pull the rug out from under me. It feels like the past 4 years have been harder in that regard than the 37 preceding them combined.

Like many fathers, I spend a fair amount of time wondering what the future holds for Annie; will she do well in school? Will she make decent friends? Play sports? Be interested in music? Date? What college will she go to? What major will she choose? What career? Will she marry?

Then you throw "wheelchair" into the equation and all your hope and dreams for your daughter have to be rearranged. No sooner do you finally make peace with your rearranged plans than someone calls and says "autism". And you start to become afraid to dream anymore . . .

I snapped. I didn't want to talk with well-meaning friends or family because none of them really understand (although they really do try). I didn't want to talk with friends in the SB community as even they have not had someone gob-smack them with the "A" word.

The wife and I were having discussions about what should be shared on the blog and to what degree of emotional honesty and then I logged onto Facebook . . . In my pain and anger I wanted to FLAME every posting there that talked about a recipe or a vacation or how someone didn't get enough sleep the night before . . . and on and on . . .

I shut it all down and walked away for a few days . . . I turned off my Facebook account, killed my Twitter account and turned off the blog.

 I think everything is back up and running now - thank you to those who have called and e-mailed with concerns. I will get back to you as soon as I am able.

Medical Update: Speech Therapy: Part 3: Thoughts and Feelings

Here is what we know:

- Annie is delayed in communication.
- Annie is 33 months old.
- We are going to get Annie the help she needs and I don't see any reason why this might impact her schooling. When she is 22 and graduating from college, no one is going to give a crap that she needed speech therapy at 2 years of age.
- Annie shows some symptoms that, with a typical child, would raise concerns concerning autism
- Annie is not a typical child which throws the autistic symptoms into question
- We are in the process of having Annie fully evaluated in terms of her cognitive abilities

Here is how I feel about it:

I have not watched every episode of Lost but I have seen a couple of seasons. On the island, there is a black smoke that wisps around. Weird, huh? Smoke is just smoke. As the saying goes, "Where there is smoke, there is fire" but in medicine, smoke symptoms do not necessarily tell you what type of fire condition is present. More testing is necessary.

Until that smoke KICKS YOUR ASS a few times. Smoke is no longer just smoke - smoke becomes a thing to be feared - it's not just a wisp to be waved away - it's a THING that has and can rock your world.

I am angry. I am angry at God. I know we don't have a diagnosis and I am trying very hard not to let a concern become a condition in my head - but it is hard.

At last count, we have had over two hundred doctor's appointment in the last three years and we have come into contact with all sorts of children with all sorts of conditions. The wife and I have often said, "mental disability would be harder than physical disability".

I believe it was Reynolds Price in his book A Whole New Life: An Illness and a Healing that asked God "How much more suffering must I go through?" God's answer?: "More".

Well right now, God can suck it.

And that's coming from someone who has to teach a class at church this coming Sunday morning . . .

Medical Update: Speech Therapy: Part 2

So after we got home from our speech therapy appointment, I received a call from one of Annabelle's therapy coordinators. She said there was something in one of the therapists reports that troubled her. The therapist made note of the fact that Annie does not seem to notice / care when someone leaves the room. For instance, if I leave the room and the therapist says "Where's daddy going? Bye daddy!" Annie could not care less.

We have always chalked this up to the fact that Annie has her own things to do and just doesn't stress about who's coming and going. Apparently, this is a "major red flag" for autism. So, yeaaahh . . .

The coordinator wants a full cognitive evaluation done on Annie right away. Fortunately, we had discussed this option with the Speech Therapist that morning and it is already in the works.

Of course, once I got off the phone, I googled "Autism Early Symptoms" and came across this page.. Raise your hand if you have ever googled a medical condition and come away relieved . . . anyone? . . . anyone? . . . Bueller? . . .

So there is cause for concern. Just to give you an example: When Annie was about a year old, we were hanging out with friends who had a 10-month old. I remarked to the dad that Annie often flaps her hands when she gets excited - he remarked that his son often kicks his feet when he is excited and it looked like Annie's hand-flapping was her version of feet-kicking. This made total sense. Naturally, hand flapping is a possible sign of autism . . . IN A TYPICAL CHILD. So what does hand-flapping mean in a child who cannot kick?

It's like going to the eye doctor, having him smear Vaseline on your glasses and asking you to read the chart . . .

Under TYPICAL circumstances A + B = C but under YOUR circumstances, A + B could equal X . . . we just don't know yet . . . .

We should find out when the evaluation will be in about two weeks - we will keep you posted.

Your prayers are appreciated.

Medical Update: Speech Therapy: Part 1

Although every child is of course unique, children with SB tend to excel at language and arts more than math and science. That being said, all sorts of delays come into play with a child who has some physical disabilities to overcome. Over time, it has become clear to us and Annabelle's therapists that she is delayed in terms of communication.

Yesterday, we had an appointment with a speech therapist who interviewed us and evaluated Annie. She agreed that Annie is speech-delayed. The official "submit-to-the-insurance-company-diagnosis" is "severe receptive and expressive language impairment". Nobody likes the word "severe" concerning anything - and we are no different.

So the plan is to have Annie attend one individual speech therapy session and one group session each week once all the insurance machinery clicks into place. So for those of you keeping track, that means 2 Physical therapy appts each week and 2 Speech therapy appts each week. Of course, we are gladly committed to doing anything we can to help the wee-one but ask yourself what 4 doctors appts every week would do to your schedule . . .

So that's the news from yesterday morning - yesterday afternoon was another matter altogether . . . to be continued . . .

Not with TODAY'S Medical Technology

It is rare that someone approaches me to ask about Annabelle's condition. The other day, we were on a daddy-daughter date at the mall and I noticed a woman admiring Annie in her wheelchair. I usually ignore people like this just because I want them to feel comfortable taking a good long look - so long as people are reasonable, it's really no big deal. This woman actually approached me misty-eyed with her hand clutching her heart and apologized saying she thought Annabelle was one of the most beautiful little girls she had ever seen. Although people's reactions are usually not so extreme, this is pretty standard fair.

This morning at church the nursery pager in my pocket went off and I excused myself from the service to find out what was wrong. Annie was fussy and so I decided to put her in her chair and let her wheel around the church courtyard. An older gentleman approached and, judging by his starched and pressed pants topped with a marine corps belt buckle, I figured he was a vet.

"What put her in the chair?" he asked cautiously. We had a nice chat and he asked all kinds of detailed questions - which I don't mind one bit. I knew the question was coming, it always does, always at the very end: "Will she ever walk?"

I gave my standard response, "Not with today's medical technology but a lot of smart people around the world are working on it. In the meantime, we are making the most of today."

Well this evening I saw this:

http://video.foxnews.com/v/4499064/paralyzed-man-walks-again-/

One step closer . . .

Medical Update 9/21/10: Spinal Defects Clinic

ROCKED IT.

The day started with an abdominal xray and ultrasound at 11am. Then it was time for the clinic at noon.

The SB community is a small and friendly one. We bumped into another SB family in the waiting room whom we knew and it was nice to sit and briefly catch up. We told them about our struggles to get Annie a stander and they suggested another local organization we could contact for help so I added that to my notes.

So here is the run-down:

Nursing:

Each clinic has a nurse who sort of acts as the den-mother. Nurse Terri came in first and quizzed us on all the loose ends from our last visit back in February. All clear.

Physical Therapy / Occupational Therapy/ California Children's Services:

These gals visit all at the same time. They confirmed that we had adjusted Annie's wheelchair correctly and asked all sorts of questions about her development etc. Annie got straight "A's"

Urology:

The ultrasound and xrays were for the benefit of Urology. The doc confirmed that they looked fine - Annabelle does not have any a-typical problems with her bladder or kidneys. This is a big deal since from the day Annie was born, we have been pressured to cath her but have resisted. We know that the typical age for potty-training is approaching and since Annie basically does not have any bladder control, we have been preparing ourselves to accept a cathing regime.

The doctor confirmed that the time has come for cathing and we agreed. We have an appointment in November to go in for cathing training and we will start cathing then. Three months later, we will go in for a check-up to confirm that everything is going okay.

One of the things that commonly goes hand-in-hand with cathing is a prescription for Ditropan. Basically, it relaxes the bladder so that it will hold more urine which along with cathing allows the patient to better control voiding. So the doc gave us a prescription for that.

Neurology:

Did not see and don't need to for 12 months

Orthopedics (spine):

Did not see and don't need to for 12 months.

Orthopedics (feet):

We actually don't see these guys at the Spinal Defects clinic but we have an appointment to see them this Thursday morning.

So that's about it! We were out of there by 3pm - shortest clinic day ever. The GREAT news is, we don't have to go back for a WHOLE YEAR!.

We were thrilled with the good news from all the doctors, thrilled that we got in-and-out in 3 hours and thrilled that we don't have to go back for a year!

Thank you for all your prayers and support!

Wheelchair Update (Long Version: Part 3)

Saturday, while the wife was at work, I loaded up the wee-one and headed across town to meet up with the Nunez family. We spent a couple of hours together and the kids had a great time meeting and playing.

The boy in the blue shirt is Anthony, who has SB. The other two are his brother and sister:

The wheelchair was a perfect fit and will accommodate Annie for the next 2-3 years. Oh and by-the-way; the chair retailed for $5700 two years ago.

I rushed to get home before the wife and had Annie strapped in and wheeling around when Holly arrived. The wife came in the door and asked what I had been doing while she was at work - I pointed to Annie in her "new" wheelchair and the wife fell to her knees, covered her face with her hands and cried tears of joy and relief.

So now was the time to make 35 adjustments to convert the chair from 4-year-old boy-size to 2-year-old girl size. Out came the wrenches and power drills . . .

Having never adjusted a wheelchair before, I think we did pretty well - maybe 90%. We have an appointment with the Physical therapist this afternoon to do some fine-tuning.

Annie had her first full day in her new chair on Sunday (and that is a story in itself).

So now, we need a stander ($3000). We are going to keep hammering away at all the applications we have pending and continue to put the word out but having a wheelchair is certainly a "win" as they say.

We are also going to continue pursuing a new wheelchair for Annie. We figure 1) There is no reason she should be denied the equipment she needs so it is sort of a principle thing . . . and 2) If we can get a new chair - we can pay the chair we have forward and there will be one more pediatric wheelchair in circulation.

We are discovering that having Annabelle in a legit wheelchair comes with all sorts of adjustments and social implications (which we will be gladly sharing here on the ole' blog).

Again, thank you for all your prayers and support.

We ask that you would continue to pray for the much needed stander that we will still be working on getting.

God is good.

PS:

The wheelchair has Anthony's name embroidered on the seat-back. The Friday night before we were to get together, Anthony's grandmother hand-sewed the red and white cover to conceal Anthony's name. And that's just about as nice as it gets.

Wheelchair Update (Long Version: Part 2)

We initially met Mrs. Nunez through our blog and the SB group at Babycenter.com. We later met in person at our local SBA chapter.

We have been out of touch for about a year and she had not checked my blog in months (no hard feelings!). For some reason, she felt compelled to check my blog a couple of weeks ago and saw that we were having trouble getting a wheelchair.

As it turns out, her 4-year-old son with SB had grown out of his first wheelchair and they were getting his second wheelchair in a weeks time. They wanted to know if we wanted their old wheelchair!

I called her immediately and she said, "There is only one problem; my son has a kyphosis of the spine so the back of the wheelchair has a custom cut-out to accommodate it".

The hairs on my arms stood up as I explained that Annabelle has a kyphosis of the spine and she needs a wheelchair with a custom cut-out! When I got off the phone and told Holly the news, she burst into tears.

We agreed to meet up this past Sunday evening to see if the chair was a fit. The Friday before we were to meet there was a change of plans and Mrs. Nunez wanted to meet Saturday afternoon (while Holly was at work). I decided not to tell the wife of the change . . .

Wheelchair Update (Long Version: Part 1)

As I mentioned, we have been having trouble getting a wheelchair and stander for Annabelle (previous posts here and here).

So our Insurance denied coverage for the equipment.

We applied for SSI and were denied.

I changed our insurance plan to an HMO (our last plan was no longer offered and this one was the only one without a pre-existing condition proviso). The new plan only covers equipment 50/50 with a max of $2000. We need $7000 worth of equipment so that wasn't much help.

We applied for Medi-cal and that application is still in process.

We applied for Shriners and that application is still in progress.

We applied for California Children's Services and THAT application is still in progress.

We shared our story with our Sunday School class a couple of weeks ago and they almost immediately offered to help raise funds and/or find the equipment needed - but we asked for prayer instead.

That's when someone who follows my blog sent me a message . . . (to be continued)

Wheelchair Update (Short Version)

ANNABELLE HAS A WHEELCHAIR!!!!!

HOORAY!!!!

Thank you for all your prayers and support on this!