Laelia Sky Wesley

I’ve sat down several times to blog about this bad week. Every day this week I have sat down to blog, stared blankly at the screen, cried, got up to walk around, sat back down and eventually just abandoned the whole endeavor. So I had an epiphany today (Thursday): I’m just not gonna blog about it–not the bad stuff anyway. But the long and short of it is that I had some health problems for the past two and a half weeks (girlie problem), I had major hassles with several organizations and baby decided she would start screaming at night because she hates the world… or is teething…or has an ear infection… or is developing her mutant ability to break the sound barrier. This budding super power caused our not-so-nice neighbor to scream at little Laelie from his apartment window to her nursery window, which made her even more upset and sent my mood from distraught to murderous. Let’s just say it’s a good thing I didn’t see his face or which apartment he came from. The coward doesn’t realize I have a sniper in the family. No seriously, I do.

As for organizations, this week we got denied by several more. Genetically Handicapped Persons Programed denied us straight off. Our particular form of arthrogryposis hasn’t been linked to a gene even thought the distal form has. Some other program I applied for sent me a brochure for Genetically Handicapped Persons Program instead of helping me after just getting denied by them. (See the “Ask your mother” blog to see what I think of that.) Let’s see who else this week… we were denied for Healthy Families who said they would try to look into stuff but didn’t call back and also CCS (California Children Services) who called to say, “We can help you!” And right when I started to get excited they continued to say they could help with something we didn’t ask for help with, but not with their program that could get us into Together We Grow. They would, since we were denied by MediCal, put Laelia in their therapy program which effectively takes her out of the care of her current therapists. I don’t think that’s the best option when we have the best therapists. It sounds like they outsource to one of our therapists anyway when they aren’t competent in one area or another. So… you know… Apparently they didn’t even read the letter I sent them that they are suppose to be responding to, and, to further prove their literary deficiencies, they mispronounced my daughter’s name several times. Usually this doesn’t bother me since I picked the most beautiful, least pronounceable name I could think of, but I got ticked off when I was informed that parents don’t have much say in their own child’s care through this program, but we do have the option to “complain to a supervisor at any time.” And, when I called my OT, “Dr. Jill,” which I call her occasionally, the lady added, “Just for your information, it’s not Dr. Jill so let’s just get that clear, she is an occ-u-pa-tional ther-a-pist, not a doctor.” I almost responded, “Sorry I don’t defer to a person who fails at basic reading comprehension! It’s Lae-li-a. If you don’t know how to pronounce something, it helps to sound it out.” It’s not like I don’t appreciate the help, but I have to do what’s best for my daughter. And I want the final say in all things pertaining to her care. Period.

So that racks up the denial list to:

*Genetic Handicapped Persons Program

*Our own insurance

*MediCal

*CCS (they have another program that could help that we got denied for)

*SSI (twice-once in person, once over the phone)

*Healthy Families

*Regional Center’s MediCal waiver (twice)

*iHSS

Uproarious I know. I took the three denials I got this week pretty hard. But since this is my nonblog, I’ll skip the details.

I also talked with another mom who’s daughter has arthrogryposis very similar to mine. She’s unmarried (and is astute enough to stay that way to get the support for her child) so her advice didn’t quite match my situation, but it encouraged me to keep going.

Kristin, Emma’s mom, also kept tabs on me this week. It was nice to have the support. It’s so cool that several different people I’ve never met are looking into new avenues for Laelia to get MediCal or help of some sort. No matter how discouraging it is to have a child who falls between the cracks of the system, I’ve come to realize that moms of disabled kids understand what I’m going through even though our situations are so different. And they get mad with me. Yeay for group outrage!

Okay so this became more of a blog than a nonblog. But whatever you call it, it fulfilled its purpose because I feel better. Thanks again Bolt and Fjord for this website.

What do you get when your OT combines thick blue tubing and an old walker? Well you get a lot more than from our home-made PVC piping, bumbo chair and thin yellow tubing. Tuesday’s therapy was fun. Once baby was all strapped in and that walker stopped rolling off the table, we were able to help Laelia make the connection between moving her shoulders and reaching out with her arms. She reached out for my mouth for the first time, then laughed and did it again! It was the best! Dr. Jill even said there was a more advanced kind of set up similar to this that they can attach to the back of her wheelchair.

Despite PT and OT being fun, baby fussed all through them both. I didn’t know she was having tummy problems at the time because it wasn’t bad until Wednesday night. I thought it was just some air sickness left over from flying back from Sacramento, but instead it was constipation.

Yesterday Laeliekins got her six-month shots. And got a fever to go with them (even after the Tylenol!) which broke this afternoon. It never got bad enough to take her in so we just waited it out. Since I knew it was shots-related, I was baffled that she was still crying even after the fever broke. But she has had about twelve (and when I say “about” I mean “exactly”) dirty diapers in the last two days. They were all painful for her to get out. I even had to (hopefully none of you are eating while reading this) help her pull a bowel movement out since she was having trouble and was really red down there. Thank God for butt paste! This kid didn’t sleep last night either, just screamed and screamed. She let me sleep from 1am to 4am, and then Tammi took her and let me sleep from 8:30am to 11am. Reminds me of when she was a little baby. You’d have to hold me at gun point to make me go through new motherhood again.

Oh I almost forgot.

When we went to Dr. Schwartz yesterday for our shots, Laelia was diagnosed with dacryostenosis or at least the start of it. Now we have to push against her right tear duct twice a day to try and avoid surgery. The pushing and rubbing causes her a lot of pain so she screams. When I first described what we had to do to Charley, he responded along the lines of, “Just kill me now.” But at least this only takes five seconds (and about five minutes of calming down) as opposed to her stretches. But the doctor told us that most babies who don’t get better had parents who didn’t do it hard enough. Now rubbing her eye duct won’t guarantee avoiding surgery, but if her eye clears up before her nine-month checkup then that would be so wonderful! If it doesn’t, we are going to try and schedule the face surgery at the same time as the foot surgeries since they both require the child be put completely out.

Poor little girl. She tugs at my heart with that quivery lip of her’s. At first I thought she was having nightmares when she wouldn’t sleep. That would have been worse since at least with this there’s treatment. I love children’s infant Tylenol, grape flavor and butt paste! If one of those companies wants my adorable child in a commercial, she’s ready for her close up.  

I’m making my sick mommy feel all better.

My auntie came all the way from Idaho to see my new KFOs!

My new dresser is finally built!

Wow, what an incredibly busy last few days! Thanks for all the advice and ideas and encouragement and help and contacts and prayers and everything! We have an SSI interview set up for Friday, an iHSS application on the way, a denial coming from insurance that we can show two advocates our insurance showed us, a Department of Health Services application and a few other long shots yet to try. We are expecting denials for most of these, but getting those denials in writing helps us build a case when we complain to the Department of Health. THIS IS SO CRAZY!!!

And I would have missed it if not for some emails, but Laelia turned six months old Thursday! Yippie!

My milk is almost completely gone; I get about three ounces in a 24 hour period. It happened because of sickness, not eating enough and stress on my body. With nursing out of our routine, little Laelie is having trouble going down for the night. It is reminiscent of her first weeks of life. I’ll jolt awake hearing her cries, only to realize that they are only in my head half the time. Her system is also adjusting to the formula, but she’s still a little constipated. It’s weird when her tummy bothers her since it never has before and I find myself in a panicked scramble to take off all her gear (braces and splints) thinking they are the culprit, only to have to put them all back on again. 

We also finally got our KFOs! We use them four hours a day and the braces the rest of the time, including nights. We need the right KFO adjusted since her leg is shorter on that side because of how the AMC pulls her leg up. I called to get that done, but the doctor was out of the office–hopefully in the next few days. Our orthopedic doctor had a death in the family (which how can I help but not totally understand) so our appointment with him for an evaluation for her KFOs won’t be until April 24th! We are also trying to get AFOs (Ankle Foot Orthotics instead of her Knee Foot Orthotics she has now) to straighten out her mid foot breakdown in preparation for surgery. According to Scope, the braces help with club feet, but the AFOs really help for arthrogryposis-related club foot. No one told us this! Thankfully she was casted for AFOs the same day they were mentioned. I LOVE THAT! Now we just need to run it by our orthotics doctor and get that auth. I also have a contact now for Laelie’s insurance who I can bug when these things need authorized. It gets done in half the time, but I’m working on getting it done even faster. I am determined to be the squeakiest wheel!

Laelia’s aunt Linda came down for her spring break from college on Friday. What would have been incredibly bad timing (after Charley and I got the rejection by Regional Center, I got sick, we ran out of hope, scrambled for options and were at each other’s throats…), but it turned out to be great. I came home to Linda cleaning my apartment… and she hasn’t stopped since! It looks livable again especially upstairs. After a Linda-made dinner tonight, I’m not looking forward to her leaving tomorrow. I’m trying to figure out how to hire her full time. Linda and Charley finished building the dresser that the ladies at Fellowship of SD got her. They have been complaining of random pains ever since. My fingers hurt, my back hurts, my spleen hurts… It looks wonderful though!

We are indeed flying to northern California this Friday (right after our SSI appointment) for Gram’s funeral. We made the plans after grandma Wynema sent me some birthday money for the flights. (When you’re turning 26 and your grandma is still sending birthday money, you’re most definitely spoiled. :)) Baby will be in tow. It’s depressing to think about all the incredible women that will not be apart of her life: Joy (Mom), Louise (Gram), Lucy (Grandma). It’s a tragedy since I know they would have adored her and fought for her like they would have for me, like I am for her. Now I’m alone and unable to replace all of them in her life, but more than that, I have this incredible responsibility to take all they have given me and supply that for my daughter. That is a responsibility that weighs on me heavily at times. She’s the apex of a legacy of strong women. And the culmination of love that has spanned generations.    

Laelia’s Grandma Joy and Grandma Lucy. In memory.

Also proof that I am capable of growing hair… eventually.

Regional Center says Laelia can’t get a MediCal waiver through them. Will not happen. Now or ever. If she had Down Syndrome or Epilepsy or something like that then she’d be eligible. This last avenue is definitely officially as of today a dead end. And that’s bad considering this was her last option.

Regional Center did accept Laelia due to her developmental delays and will look into any options she may have to get MediCal, but they warned us that they didn’t know of any. They will also help with our therapy copays starting today. Every little bit helps, but really we need $30 an hour for Together We Grow more than we need $30 a week to help with therapy. I wonder if Tammi and Megan know they’re worth $30 an hour!

I see the closed door, but I don’t see a single open window.

Charley is getting me a list of state representatives and congress people, etc, to mail some letters about our situation. I have written two letters to my insurance person (who has totally blown us off) and another to Aetna’s main office when I figure out where to send it. 

I hate feeling like my little girl has fallen between the cracks.  

My complaint the other day to Scope came to fruition. I got a call from the manager who apologize again, and then I apologized to him for the way I came across (it was a regular love fest with both of us apologizing and promising to work better together in the future). He admitted to overlooking Laelia’s shoes and forgetting her paperwork. I have a feeling that won’t be a problem in the future. He promised the KFOs that we requested from Scope on February 15th would be ready Friday, April 4th. And that’s good because her orthotic shoes (that she’s outgrown) put a hole in her foot this morning. 

On top of everything else, my boobs hate me! They have stopped producing breast milk. I was sick this morning and had huge knots in them. Getting mastitis for the third time is the last straw!!! Although this last time I caught it early and so far have only been just a little sick, but my milk supplies have suffered. Both sides only produced one ounce of milk between them after I pumped for two and a half hours this morning. We bought some emergency formula last night so we’ll be okay. I cried all morning feeling I’d lost something precious. 

Charley and I held each other and comforted each other today. We put Laelie in the middle and hugged and hugged. I love my little family so much! I sometimes worry that if we can’t get into Together We Grow or some daycare that has nurses or therapists doing her stretches, what it will do to our marriage. Not that we’d ever get divorced, but I mean our happiness wanes as we deal with our baby crying after painful, 30-minute stretches everyday. I’ve been grinding my teeth; Charley has been getting unbearably numb. It just makes everything harder. Laelia continues to be a joy, but today after I stretched her and then held her as she cried, I was thinking that this would be nothing for a nurse, but it’s terrible for a mother.   

So my arm is killing me and I went to urgent care where they gave me muscle relaxers and said I had “muscle problems.” I argued, but the doctor gave me the you’re-an-idiot look like I was a pansy. She handed me a booklet called Neck Owners Manuel and sent me home. Okay. Then I went to a *real* doctor who was amazed I could sleep at night and he diagnosed me with acute tendinitis and bursitis. I got the most painful cortisone shot of my life (where they move it around under the skin… okay I *was* a pansy for that), but my arm and thumb are still asleep–been asleep for five days and four hours.

I’m not allowed to hold my child or lean over her. So Wednesday Laelia’s grandma, Christina, flew down here on the next plane out. I called my dad to say I desperately needed help and couldn’t move then his wife shows up in San Diego about five hours later!   

I called the breastfeeding hotline and just got the go ahead to breastfeed again… only now Lays wants her milk in a bottle. The formula we used while I was on the muscle relaxer made the baby’s stomach really upset. She threw up a ton all over her daddy and fussed all day long while making noises in her diaper.

Actually I got sick as well with bad diarrhea. So between baby and me, we were pretty fussy.

I also have missed work this whole week and feel worthless.

So bad day. But it got worse.

We switched orthopedic doctors today (Friday). This new one also does not believe Laelia will walk either, but actually explained the physicality behind that belief. Whatever went wrong inside me, made it so that her muscles didn’t grow normally. The doctor said her AMC is like Polio, we don’t have a cure and don’t understand why she doesn’t work right. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her. She also does not have the arm strength to use a walker or wheelchair. She’s not quadriplegic since she can twitch fingers and slightly bend elbows. Once again we find ourselves crying out to God and stunned with grief at the thought of a little girl who won’t dance on her wedding day or who can’t go to the bathroom without assistance. 
 
I guess our other doctor knew this but just didn’t want to break the news? Our new doctor actually went and got Laelie’s x-rays out and explained them to us. Based on the x-rays, she will need major surgery very soon on her feet. But I’m just not up for that. I liked my pseudo-hope and now I feel like it’s gone. Like it says in Proverbs 13:12, “Hope deferred makes the heart sick.”

I got an email from another AMC kid’s mom. It was titled, “Don’t believe them!” Her daughter does a lot more than doctors thought she could. I told her that meant a lot, but I wish one bloody doctor would tell me that! I told her, “I used to be so happy with every little gain she made, but now I’m depressed because so many doctors have stretched her life before my eyes and what I see is a power wheelchair and help going to the bathroom. I want to hope again and I want my joy back.”  

Back at the ranch…

Blissfully unaware of what was going on around her, Laelia discovered that her voice had an upper register last night (Thursday). During the depressing yet informative doctor’s appointment this morning, she made lots of high pitched meowing noises. We were discussing heavy, stinging facts of her condition and the whole time Miss Noisy Pants made every sound in the book.

Once again I refuse to have the flu like a normal person! Last time it turned out to be Laelia (then known as Peanut) hiding in my uterus like a bad baby. Well this pseudo-flu just got worse and worse and finally turned out to be mastitis. Oh I made a link. Everybody be impressed now.

So Saturday night/Sunday morning I had a fever, chills, headache, nausea, body aches and a terrible lump in my breast that hurt like crazy and created puffy red lines. I had cold washcloths on my neck and forehead, but was under seven blankets. The body aches affected my hips so much that they couldn’t touch the bed so I had to lift and lower them all night. I got antibiotics yesterday and today I am finally feeling well enough to lift my head up. Yes it was that bad!

Baby didn’t understand why I cried when she breastfed. (I also threw up after pumping from the pain.) I went to the doctor yesterday and he told me to keep the breast empty but stop breastfeeding my child on it despite what I read online, and to use formula until we are certain the infection is gone. He said the infection can go to baby.

Charley took yesterday and today home from work taking care of me and baby–although I’m not sure which job was harder… or who cried for him more.  Lucky for us, one of Charley’s coworkers, Danielle, made us a bunch of meals that Charley just had to pop in the microwave and serve up. Plus my auntie Linda R. and cousin Dolly had sent some frozen meals in the mail (I didn’t even know you could do that) so we’re set!

When baby was handed to me, she would cuddle and breastfeed (on the good breast) for over an hour. I think she just missed me. I was just so afriad I would make her sick that she was put in her box or swing. Now that I know what it is, she sleeps next to me.

I look terrible, but I’m doing better. Baby also looks terrible, but that’s only because Charley still can’t figure out cleaning her face. Poor thing.