Archive for March, 2008

Angry

Monday, March 31st, 2008

My grandma, Laelia’s great grandma, Louise (aka Gram), died this morning. We had almost named Laelie after her; it would have been Laelia Louise. Now I wish we had. I miss her terribly.

I find myself really angry for the first time someone in my family has died. Yes I’m sad, but I’m more angry than anything. I blame someone in this situation. Gram was miserable and I blame the party who made her miserable. I’m mad.

In fact I just gave Scope a piece of my mind. That included finally saying what I wanted to say to a receptionist, but also demanding an apology (then getting one and demanding it in writing…I’m a bad person) from the manager who is never anything but nice to me. Hopefully my daughter will not have to wait so long next time for orthotics. A month and a half is too long when you’re only a few months old!  I wish I had been a little nicer to the manager, but I’m glad I finally got up the nerve to  complain!  

I then called my insurance but they were out for the day. To make up for not getting to try out my new found courage (aka blinding anger) on new prey, I called up Charley to say what I *would* have said to them and then pouted all afternoon.

Oh and the whole time I was  asking Scope, “Why wasn’t this done?” and “Why did that take so long?” in my not-so-nice voice, I was forced to play peek-a-boo with my daughter (who would cry  when I  stopped) AND pump breast milk.

Can you picture how ridiculous that  looked!    

Politics

Saturday, March 29th, 2008

I’m not sure what political statement baby is trying to make here. :)

Well speaking of politics, I have decided to write to  my congressman about Laelia’s situation. I am also writing an official complaint to Scope about her KFOs and braces being unconscionably  delayed.  I’m  also writing another letter to Laelia’s insurance case worker  about  covering nursing care. And if I don’t like any replies I get back, I’m going to the Dept of Health.  And if all that doesn’t work out, onto the local  news media!      

Well  some of those  things are only the plan if  Laelia is not accepted by the Regional Center for a MediCal waiver that will get her into Together We Grow. Oh and  our Regional Center appointment got changed again. Now it will be Thursday, April 3rd. If that doesn’t work out, then it will be the 14th.

But I’m not backing down! (This from the  person who was  too scared to change her major in college because the registrar was a meanie and she was afraid to complain.) No more Miss Nice Mommy!

MediCal

Thursday, March 27th, 2008

We couldn’t meet with the  Regional Center next Monday like we hoped, but we  now have an appointment for the Friday after next  (the 4th). Actually their first choice was the 14th, and when I was presented that option as a more convenient time for  them, I chose the selfish, self-centered earlier date. Why wouldn’t I? I wanted this done yesterday and I’m not nice right now! Plus this process takes months and then MediCal’s process will take months and I need care for her in June! I have a time crunch, and it doesn’t look hopeful.

All this in hopes of getting a waiver from them for MediCal.  And for you non-Californians, MediCal is Medicare in California–because  California likes to make things virtually unGooglable. Did you mean medical questions, medical dictionary, MEDICAL ENCYCLOPEDIA???

Charley called the business office of Together We Grow, that daycare with the  nurses that would do Laelia’s stretches and therapy. We asked what  the cost out of pocket would be since  we  were denied for MediCal  AND SSI assistance. The lady said it was $30  an hour which would be $750 a week (and since they don’t do part time for kids Laelie’s age it would be even more money). So totally unreasonable. But  that would make Laelia the  ONLY disabled kid unable to get MediCal for this program. 100% of their other kids got it for their disabilities. So what’s the problem? Good question. The problem happens to be that my daughter’s condition is terribly rare… or  terrible and rare. It’s considered solely low incidence by the Regional Center and that’s why they denied us. Even though she is going to miss major developmental milestones, like crawling. And MediCal thinks we can afford this  after looking  at our income since  we make, get this, over $1,400 a month gross! DENIED! Those kids can figure this out on their own! MUAHAHAHAHA–um, that’s their evil maniacal laughter.  

Now,  I realize Medicare and SSI  are falling on hard times, but if being born twisted, stiff and without major muscle in ALL limbs doesn’t mean you get disability or help with special childcare, WHAT WOULD?

We can’t find a childcare facility that would take her. Some would take her but not care for her special needs which is tantamount to child abuse in my opinion.

I don’t know what to do next. We can’t afford $30 an hour for childcare, but I’ll be honest with you, I can’t do all her stretches anymore. It’s killing me slowly. It tortures my instincts and makes me numb. Maybe a stronger mother could do it, but I hate it and the thought of hurting my daughter terrifies me. So quitting my job and moving to cheap, ghetto  town  is not the answer since I would be doing 100% of her awful care. No no no.

Tonight the baby made a big mess and needed a clothes change. I just stared at her for five minutes totally overwhelmed. Sometimes her condition is just too much. Her braces need changed all the time because her feet turn purple. I didn’t do her physical therapy because I got this weird depression where I barely managed to keep the baby fed, clean and changed. Charley comes home to me curled up with my baby just staring into space. She looks thrilled to see her daddy as if she’s receiving stimulation for the first time that day. That’s probably just  the depression talking. I ended up sleeping too much yesterday while baby stared at me. I even slept through a friend’s visit. And all this with three hours of babysitting a day, imagine with none!

If I can’t get help, I don’t know what I’ll do.

O for a thousand tongues…

Wednesday, March 26th, 2008

 

Laelia  uses her tongue  to  say, “I want that!”  as we already knew. But she also uses it to express herself in other ways. Here are some of the things I think she’s trying to  say with her tongue:

I love this!

I’m having fun with my grandma!

I’m bored!

I love  talking with my mommy!

I think I may be hungry!

I’m talking to grandpa!

   

Busy week

Wednesday, March 26th, 2008

 

My Easter dress and friends.  

Just to start off, we haven’t met with anyone from the Regional Center yet. I thought they would come Monday, but we’ll try to see someone next Monday. We were told it is a long process once it actually gets started  so we are certain it will take too long when you figure in MediCal’s wait period. We’ll be looking for someone to help watch Laelia this summer while we continue to try to work it out.  You know since we don’t want to quit our jobs, move or get divorced. :)  

Miserable process.

Anywho, this was a busy week. We had Saint Patrick’s Day followed by a Baby Shower for Laelie followed by Easter. All three of us have been battling sickness too.

 

Saturday was the shower lovingly  thrown together by Lisa. There were plates that looked like onesies  that said “Love Bug” on them piled high with lemon bars. :)  It was  great. Laelie got lots of love and attention and  so did Mommy for that matter. It was a very fun and encouraging party.

The next day was Easter Sunday where Laelie hung out in the nursery with her friends. (See the picture above.) Once I hand her off to the nursery worker with instructions  that include typical things such as, “Make sure her feet don’t turn purple,” I always get this crazy desire afterwards to run down the street screaming, “Sweet freedom!”  The  desire became so strong that even though it was Easter, I suggested to  Charley that we use our baby-free time to go for a walk (or make out in the car–I’m not picky), :)  but  Charley always makes sure I get safely across the grass and into church.

After that we  went to a potluck with the same baby shower  crowd (plus the husbands) and got to relax. It was hard to go back to work on Monday after all that excitement. Laelie started to get sick around that time too. In hindsight I did let a lot of cute little kids touch the baby. Bad Mommy! I stayed home with her  Tuesday and she’s doing  better now. Of course I found a large lump in my breast today and figure it may be round three mastitis. Does it ever end?

After baby and I got back from her baby shower on Saturday, Daddy spent the rest of the afternoon teaching baby how to play Mass Effect. I included the video. Enjoy!  :)

Happy Saint Patrick’s Day!

Monday, March 17th, 2008

I’m wearing green so why are people still pinching my cheeks!

 

I love this picture.  When I put her  right hand on her left,  she dug her  nails in  making it look like she’s pinching herself. And would you check out that strawberry hair! I’m Irish (my maiden name is Conley), so it’s no surprise I produced one Irish-looking kiddo.  Perfect holiday for her. :)  

I think we’ll celebrate the day by dying  Laelie’s milk green and watching Charley freak out when he sees it. What? It’s just been sitting there a little while and collected  a little mold, Honey, don’t worry about it. :)

Just one of those bad weeks.

Sunday, March 16th, 2008

This was just one of those weeks where Lovely Laelie’s disability was thrown in our faces several times. We had one to three  medical visits everyday this week. Plus I had to explain my daughter’s diagnosis and special needs  to 14 new  people this week including, a Work Life program person, two lawyers, a San Diego’s Regional  Center  representative,  a daycare referral person, a counselor referral person, a  therapist and random  medical professionals.  I usually can avoid it if someone asks about her. Like when the lady who pierced  Laelie’s ears asked about the braces, I just told her my daughter had club foot. And when random strangers see her braces or splints,  I can  just say it’s for keeping her straight. If a nurse not related to her care team asks, I just say she’s disabled. If someone on the street asks, “What happened?!” I respond, “Skiing accident,” and keep walking.  :)

The worst of our week started Wednesday. We were scrambling to get all our paperwork together  for our MediCal appointment  on Thursday morning. One thing I had to get was a doctor’s written proof of Laelia’s disability. I didn’t see that on the list until Wednesday of course. So I call her pediatrician who is out that day. But then his nurse went out of her way more than any medical professional ever has for us  and contacted all the other doctors in the building. But since they had never personally  seen  Laelie, the nurse had to call Children’s Hospital where she found  Laelie’s orthopedic doctor. Super nurse then got his  office to  print out his notes. Then  she called me back.

“Where do I fax this to?”

“Well I see them tomorrow so just fax it to my work and I’ll take it to them tomorrow.”

I get the paperwork about 30 minutes before I left work. It had already not been the best day at work and I don’t think I was prepared for what I read. Of course I was curious as to how a doctor’s note could be three pages (including a cover page) long. I figured it would be, “Laelia Wesley has arthrogryposis and amyoplasia in all four limbs  as witnessed by me. Signed, Mr. Doctorface.” But what I was reading was the doctor’s impressions and findings in  detail. I read over, “…significant deformity,” “…significant upper extremity involvement,” “…certainly require surgery,” “…not significant leg power,” “…walking ultimately will be poor,” “…goals need to be reasonable,” “…I suspect she will come to utilize an electric wheelchair,” “…the need for good upper body strength to control walker was stressed [to parents] (as in she won’t be able to),”  “…toes will require flexor tenotomies at time of posteromedial releases,” and “…all of this was discussed in quite frank detail with the family, trying to paint a realistic picture, though not be overly pessimistic,” read his notes.

I have the feeling I was never suppose to read this. There were some things I don’t remember hearing, but I think my brain just tuned them out after a while. It was like asking for water, getting a fire hose to the face and then reading later how we drank ten gallons of water.

He probably didn’t want to tell us any of this, but had to. That must have been a not-so-fun job for him. I remember crying all that day.  To think it could have been a harsher and blunter visit… that’s crazy.

That fax completed the paperwork we needed for our MediCal appointment.

We were denied for MediCal the next morning.

MediCal is required for getting Laelia the nursing care she needs at a special daycare, Together We Grow. Something  we need regardless of me working or not since trained nurses could do the morning and afternoon stretches and save me the pain of hurting my own child. (WHICH I HATE MORE THAN ANYTHING IN THE WORLD!!)  There’s a spot with her name on it, but they take MediCal and we couldn’t get it. I feel like I failed my daughter.  Laelia’s main care taker is moving and I’m running out of options fast. I could quit my job to care for my daughter, but we would have to move  to a cheaper place since rent would then be a problem.

I called two lawyers Thursday to see what I could do, if anything. Turns out  unless my circumstances change, there’s nothing to be done. ‘What needs to change?’ I wondered. Well it turns out that I need a divorce. Charley and I could still live  together, but we need a  paper divorce  to get Laelia the care she needs. The system is broken! I considered that option all day Thursday and hated the  government for even making me think that way. I felt wretched.  It would fix absolutely everything and solve  all our financial problems and medical needs. That’s so stupid! I  couldn’t bring  myself to do something like that for anything, but for all the parents in worse situations  who have had to make that choice, I can’t judge them one bit. It’s a no win option. If I did it, I’d hate myself, but if I don’t do it, I fail my daughter.

Of course our other option is to spend our savings on Pop Rocks, quit our jobs and let the government provide our every need. I’m being a little sarcastic, but as much as the MediCal worker praised us for being responsible and honest, I feel like we got penalized for it in the end.

Because of Laelia’s condition and lack of major improvement, our savings may go towards durable medical equipment (i.e. wheelchairs, etc.) instead of a new home. According to our PT, power wheelchairs can run tens of thousands of dollars. Insurance would cover some of that and we would get them used of course until she stops growing, but it’s ridiculous! We had prepared for a new baby and had adjusted our living accordingly, but how could we ever prepare for this? In the “How am I going to pay for all of this?” section of the AMC FAQ  I had printed  off the support group website a while back it says, “Your child will almost certainly qualify for Early Intervention programs, and probably also for medical assistance. [...] This is why you pay taxes, people. Nobody should have to go bankrupt because their child was born with a disability.”

We’re not rich and  we’re certainly not poor, but  we’re getting screwed by the rich and the poor. The rich hoard all the resources and the poor get all the resources. It’s not like the government will let me stop paying the poor people’s disability payments and put that towards my daughter’s.

Ugh.  

We’re not without hope, though. Laelia does qualify for the Early Start program. We also just finished her Shriner’s application and drove it to our local Shriner temple.  All their care is free.  We’re also hoping to get into the Regional Center. She was denied already, but we really need to get her in there for developmental delays (i.e. not rolling over, not sitting up, etc.). It’s also a free service if we qualify. We really need this! Our Early Start coordinator is going to try to get us an interview for next Monday after spring break. I’m praying!

Friday we met with an orthopedic surgeon. He recommended putting off surgery and commended our conservative approach to surgery. The surgery is needed, but it’s a matter of when. (I  wouldn’t call my not wanting to deal  with it a conservative approach, but okay.)  We met again with Laelia’s orthopedic doctor and asked lots of questions. We even got copies of her January x-rays so we could show other doctors for second opinions. We’ll get new x-rays in two months. After that visit, we went to Scope for some casting. They are making molds for her KFOs (finally!) and they will be ready in ten days. (The order was put out for them on February 15th!) After that I thanked God for the weekend and a break from this crazy week.

Back to work on Monday.

Our new crib!

Friday, March 7th, 2008


Can’t sleep until I get that mobile!


First nap in our crib interupted when we spot the mobile overhead.

This is Laelia’s new crib! Well, new for her. It went through Joe D’s kids and then Holly’s kids and now it’s Laelie’s. It’s huge compared to the bassinet (let alone cardboard box!) that she outgrew. She goes right to sleep in here and doesn’t wake up ’till morning. Very nice for Mom and Dad! I feel all parental now that I can say, “Go to your room!” :P

Achievement: the reach across!

Friday, March 7th, 2008

 

Laelia has been able to lift her arms a couple inches while lying on her back for a while now. She arches her back to achieve the lift. She also has been able to bend her elbow under certain conditions.  But I was thrilled to see her reach across her body! Then I realized that  the little acrobat was simply putting all her skills together! It’s kinda hard for her and you can see the effort painted all over her face, but she’s determined. And of course once she did it once, and was excessively praised, she did it eight more times just for the excited noises that would erupt. :) By the end when I had documented this ability  in several  ways she did it again while fussing, like,  “I know you’re thrilled, but can we stop now, pleeeeease Mom!” Then she fell right to sleep! :)  Hmmm, maybe Mom was being a bit of a slave driver. For those of you that have mentioned you can’t get the videos, below is the process documented  through enough uploaded pictures to make  all your computers crash. :) Enjoy.

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Sea turtles, life changes and positive psychology.

Tuesday, March 4th, 2008

So Charley and I got upset after reading about a  sea turtle who is missing three flippers.  I guess there was this turtle who was hurt badly, and, whereas they normally  would call this  a lost cause, an intern “begged for a chance” to care for it. Now they are making the first ever prosthetic flipper. They’re working hard and putting lots of energy into this project. It’s even gotten some media attention.

So my question is: Where can I find an intern who cares about people  and is willing to put work into making a gadget to  help my daughter  become ambulatory?  We need braces with a bar for Laelie’s club feet that also have  KFO-like knee straightening deals for her legs. The dumb turtles of the world can take a back seat!

Gee, am I in a mood or what? :)

But seriously, it’s a turtle.  There are actual  “quality of life” concerns for this turtle, which is  great for the turtle,  but come on. After reading about the work going into this, I just feel a little jealous.

Even though I complain, I have this feeling that Laelia is going to be one of those kids who would want mommy to help the turtle. She loves turtles as you can see. :)

*sigh*

You know, one thing that amazes me is how the whole universe turned upside-down to make room for  Laelia’s bright soul. I met a lady  the other day  who was helping with the paperwork side of Lady Laelie’s care. She asked how old my baby was, and, after I told her, she asked if they had caught Laelie’s condition in an ultrasound.  We did have a lot of ultrasounds, but we didn’t know to look for something this rare. Since everything  else  came out normal on the ultrasound, we didn’t find out she had AMC until she popped out on October 3rd. We got her official diagnosis on the 4th in the morning by our geneticist. “Wow,” the lady said, “So your whole life changed just a few short months ago!”

Wow. I guess it has.  It’s hard to believe that a few months ago our lives  were totally different–and less complete, but of course we  didn’t know it yet.  It feels like it’s been years and years. And in that time I became an expert on AMC–the amyoplasia version of it anyway–or I guess I should say the Laelia version of it.  How weird that it’s only been a few months!  I feel like we’re finally getting a handle on  getting over the grief and heartache of her diagnosis. We’re learning not to ask the “What if she never…” questions or limit her in our minds or words or actions. Of course we relapse sometimes, but we’re getting better all the time.

Once upon a time in one psychology class or another, I heard that a person’s overall emotional state after extreme stimulus, good or bad, will revert back to “normal,” given time. So if you win the lotto and your happiness spikes, or someone close to you dies and your happiness tanks, given enough processing time, your overall happiness will level out again. I think I’m nearing that stage where everything levels out again. Sometimes I’ll get some downward trends, but overall, things are becoming the Wesley family’s version of normal. :) “Normal” for us includes  quite a few more hospital visits than the typical family, but I think  a few  more joyous discoveries than the typical family too. Expected physical milestones  for babies  are not something that apply to us.  We don’t expect anything to come easily for our daughter, yet every new movement she discovers is celebrated.  And every new suprise  makes for an interesting and exciting life. There are things she can do right now that I honestly thought she never would. (Like have enough passive range of motion in her arm to  touch her own face!)

So even though some doctors or insurance people or, sadly, turtles get me down, :) I know I have a wonderful, intelligent, happy daughter who is full of life and promise. She has a great attitude and loving personality. She already  puts me to shame and she’s only five months old.