Archive for October, 2007

Appointments

Tuesday, October 30th, 2007

So we showed up today at the physical therapy building in person and determined to be obnoxious until we got an appointment. We came with enough baby supplies to last a while. We were all prepared to go to war and bug people and stand there in people’s faces and all that, but in reality it was all niceties and the whole business was over in 20 minutes. We got her physical therapy and her first appointment is tomorrow! Of course insurance is only letting us schedule her through January (with three weeks off for Christmas) and they swear they couldn’t have done this faster.

We also had our occupational therapy appointment today (same building). As we feared, it was just an evaluation to see if we qualified for future therapy after which our insurance will take two to three weeks to authorize it. However, after explaining our situation, the therapist spent a ton of time showing us exactly what to do at home so as to not waste valuable time. She said that our insurance will just take its three weeks of dragging its feet and there’s nothing we can do about it. It will be exactly like it was with physical therapy, except our OT appointment was a much better experience. The therapist told me what she was doing, had experience with many other arthrogryposis patients and made sure we weren’t losing opportunities.

So for the bad news.

Laelia has some problems I didn’t even know about. Her shoulder is deformed in a way that makes her pull to the right and one arm becomes shorter than the other. The therapist has no idea what exactly is wrong and we have an appointment with orthopedics to look into it next week.

Her wrists are also worse than I feared. She will get casts on her hands and arms now to try and make any difference. If you read a previous journal entry, you’ll know that casts were not an option we wanted due to lack of mobility. Things change. The casts are coming next week and I just pray she will still be able to type someday.

Now we know what to do as far as therapy at home. Five times a day (a goal we have set for ourselves) we hurt Laelie for about five solid minutes (that seem like an eternity). She screams and it hurts her.

The therapist told me that it goes against instinct to do what she expects me to do to my baby. But I have to do it anyway. I don’t want to hurt her, but if I don’t then she’ll be completely crippled for life for sure. She may be anyway. This is hell.

In a week she will have all four limbs in casts. The casts are a constant pull and very uncomfortable. But at least then we won’t have to do as much therapy since we won’t be able to get to her elbows, wrists or thumbs.

Charley has dutifully taken the brunt of the therapy while I go upstairs and rock and cry.

Laelia also has a cold that makes it hard to breathe and nurse. She wakes up several times during sleep in a panic, wheezing and gagging. Her poop has changed color because of all the mucus and she’s coughing and sneezing. I have the most miserable baby. I hate life.

I had this dream

Tuesday, October 30th, 2007

I had this dream where I had just had my daughter and the nurse brought her in the room and explained that she was handicapped. Then she gave me a choice. I could choose to switch places with my daughter and have the arthrogryposis instead. The nurse explained that no one would judge me if I choose not to do that and it would be much easier on a baby who is flexible and hasn’t known any differently than it would be on an adult. As she spoke there was a woman being wheeled down the hall in a wheel chair. She had a bouncing, wide-eyed baby in her lap. The woman’s head was tilted to the side and she was drooling. Her eyes were a blank stare. Her husband pushed the wheel chair while crying. It was kind of like a horror movie. That woman took the mental disability from her baby. I looked down at Laelie and it didn’t take any time to decide to take her pain away. Like magic, her hands and legs stretched out and she sucked her thumb for the first time. I was so happy. Then I tried to pick her up and I couldn’t. My wrists bent my hands backwards and I couldn’t lift my arms to hold her. My legs were pretzel-like and I couldn’t walk over to her bassinet. The nurse handed her to me and I couldn’t touch her, but just put my cheek up to hers. She was hungry and I couldn’t hold her to my breast. The nurse shook her head and said, “I was afraid of this. Why do mothers always have to take their child’s place?”

Facts

Saturday, October 27th, 2007

Fact: 100% of Arthrogryposis patients REQUIRE physical therapy.

Fact: 100% of Arthrogryposis patients need physical therapy IMMEDIATELY after birth.

Fact: Children with amyoplasia have fairly severe contractures at birth. With physical therapy, however, they usually attain a much improved range of motion.

Fact: Physical therapy is most productive in infants due to their flexibility and the longer PT is not started, the worse off these children are.

Fact: My daughter was diagnosed with Arthrogryposis and amyoplasia LESS THAN 24 HOURS AFTER BIRTH and we were told by two doctors that we needed to start physical therapy THAT DAY!

So why the hell are we not getting PT after three weeks!? We were “authorized” for it and they won’t schedule her! We were also only authorized for a finite number of appointments! When 100% of Arthrogryposis patients require extensive PT and depend on it for better basic functioning in the future and not getting it hurts their chances of walking then why in the @#$@$! world do we not have damned PT yet??? Why limit our appointments?! Why the hell would you need to give us only a few and then reevaluate her later?! Does it look like there is a cure for this?! Is there a flippin brain cell in any of their heads! We are doing PT ourselves at home with no medical training and have NO FREAKING CLUE WHAT WE’RE DOING!!! Has the world gone mad? We’re calling all the time! My doctor is calling them all the time! Our insurrance is trying their best not to pay for anything by making it impossible to get the ball rolling. We would pay for it ourselves! Just get it done! If she were openly bleeding would they not put bandages on her for the expense and hassle?!!! I bet not! I’ve never heard Charley raise his voice at anyone in my life and he’s had to do so several times to these people and still she gets no physical therapy! Idiots! And don’t even get me started on occupational therapy… that might not even happen for quite some time. Accccccccc!

Charles here

Saturday, October 27th, 2007

Charles here.

So as Alexis mentioned, we are making some progress with getting Laelia some help. She still needs regular PT/OT appointments (pray!), but she has casts now, making her about three inches longer than she was before. It’s nice to see some progress.

I’ve been trying to do some physical therapy exercises with her uncasted joints each day, just trying to get them moving around within their range of motion, but I don’t really know anything about how hard I can pull, or how often to do it, or how many reps to do each time. Hopefully that information will come with future appointments.

I feel like I’ve been pretty good at being content throughout my life. Now that Laelia is born, I find myself not even wanting to pray for contentment. I know that I can’t spend my time living for some future day that may or may not come; I need to rejoice in the blessings of my daughter and my family right now. But praying for contentment feels so much like just giving up. What if God actually gives me contentment, instead of changing things? So instead I’m praying to God that I would desire contentment–and in the meantime, can’t He just fix everything right now?

Laelia slept six hours last night

Saturday, October 27th, 2007

The Lord has done amazing things for us! What joy!

Laelie slept six hours last night! Sure, it wasn’t in a row, but that’s the most she’s slept at night since… she was born I’m sure. :) It felt good.

I was worried that Laelia was afraid of the dark a while back. I think now that it was more the routine she was getting used to. Putting her in her bassinet and turning off the lights meant we weren’t at her beck and call anymore. It also meant that feeding time was definitely over. Well that just wouldn’t do so she would scream. Now she sleeps between us and she can get her food faster plus we’re right there in case she has a need. Now I can turn off the lights at night and it has made a big difference in how I sleep.

She’s so cute. She likes to make these goofy faces that remind me of her grandpa. I call her Squishy half the time because she’s got this squishy little face and the other half the time when her neck is stretched out a bit she looks like a little lady. I think I’m getting a glimpse of what she’ll look like when she’s an adult. It’s a weird feeling. I see so much of myself in her, but lately I’ve seen so much of her in myself. I enjoy looking at her.

She did get a cold and has been a little miserable lately. We called the nurse at 2am only to be told it was a cold and she wasn’t dying. (All this while the nurse waited patiently as we tried to figure out the rectal thermometer for the first time. Poor kid.) So the little girl has a runny nose and a cough that strikes while she’s eating and makes her gag. She also has problems breathing and we have to suck her nose out a lot. But it’s not a terrible cold and we’re getting through it. We also found a rhythm of breast feeding and breaking to breath that works for us. Also because of the cold, she now makes little whiny noises while she breaths which have been our first clue to what her voice sounds like (besides her screamy voice). Her little whines were so convincing that Charley asked *me* to stop. He thought I was making the noises. :)

Her casts mean that we can lift her legs when changing her diaper for the first time! You wouldn’t believe how impossibly hard it is not to be able to do that. I couldn’t change her diapers practically at all because my hands weren’t big enough to lift both hips while cleaning also while keeping her curling feet out of the poo. Lifting her hips had the effect of cramming her head and neck into the table. Now it’s like changing an average baby. Her legs are just a little heavier and we have to do it a little slower, but her feet aren’t getting gross anymore. It’s a little thing, but such a help.

Also she can sit in her car seat now! It was really hard for her before because of her legs, but now the casts pull her little legs out and we can get her buckled. (There were two times that I just told Charley I buckled her and I had only buckled the chest part because I didn’t want to hurt her anymore. I know that’s terrible, but I’m pretty sure I’m a ways away from turning into Brittney Spears. :)) Now she is fine in her car seat. So however hard the casts are, they make up for it here.

Hmmm… still feeling better. :)

My mood is definitely improving

Saturday, October 27th, 2007

My mood is definitely improving. I wondered about sharing this next part, but if I can share about my depression I can certainly share what’s going on in my spiritual life. It seems when people go through these major life changes they seem to then “find religion.” It’s comforting. It’s understandable. It’s not me. Nevertheless, Charley’s been reading me the Bible at night as if pumping the words into me will make the depression magically disappear. He’s definitely the only one that would get away with that. :) He was reading me Luke 18 where requests failed to be made to God and Jesus asked, “When the Son of Man comes, will He really find faith on the earth?” When Charley read it, I said, “No,” without realizing I even felt that way. My prayers just seemed to be bouncing off the ceiling because I had no faith that God would answer them. I studied the Bible academically in college so I knew a lot of verses on prayer.

“Call to Me and I will answer you, and show you great and mighty things, which you do not know.” (Jeremiah 33:3)
“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” (Matthew 7:7)
“The effective, fervent prayer of a righteous man avails much.” (James 5:16)

But I forgot about the conditions of prayer. People don’t just get sports cars because they ask for them. So I researched those conditions put on prayer (in between feeding, burping, bouncing and diaper changes).

I have to have faith.

“If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double -minded man, unstable in all his ways.” (James 1:5-8)

I need to let God know my requests even though he already knows.

“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God.” (Philippians 4:6)

I need to stop killing people. :) Okay…

“When you spread out your hands. I will hide My eyes from you: Even though you make many prayers, I will not hear. Your hands are full of blood.” (Isaiah 1:15)

I need to not be a hypocrite or terrible person.

“Woe to you , scribes and Pharisees, hypocrites! For you devour widows’ houses, and for a pretense make long prayers. Therefore you will receive greater condemnation.” (Matthew 23:14).

I need to mean it, not just stay a bunch of words.

“And when you pray, do not use vain repetitions as the heathen do. For they think that they will be heard for their many words. Therefore do not be like them. For your Father knows the things you have need of before you ask Him.” (Matthew 6:7-8)

And (the hard part) I need to pray for God’s will to be done no matter what my request. Meaning I need to want God’s will first and my wants second. Even if my wants are for my daughter. Because if my requests don’t align with a perfect plan I cannot see, then they would be bad for her.

“Father, if it is Your will, take this cup away from Me; nevertheless not My will, but Yours, be done.” (Luke 22:42)

“In this manner, therefore, pray: Our Father in heaven, Hallowed be Your name. Your kingdom come. your will be done on earth as it is in heaven.” (Matthew 6:9-10)

So I decided to have faith. I started praying that God would heal my daughter and started to believe that he would. Maybe not fully, or in the way I would want, but he will heal her to some extent. I think he wants her to have this condition and that it’s part of a plan. I think the whole situation sucks and have told him as much, but I’ll have faith anyway. :) Even though God knows I’ve been mad at him, he still gave me a lot of joy and hope and faith these last few days. So I’ve been feeling better.

My friend Tammi sent Laelie a letter

Thursday, October 25th, 2007

My friend Tammi sent Laelie a letter and I wanted to share a part of it. It’s based on the Full Story on this site that I wrote back when we first found out about Laelie’s condition. But Tammi realized this Bible passage seemed to speak to my words like God and my thoughts were having their own conversation.

She wrote:

You have been born with a disabillity called Amyoplasia Congenita Disruption Sequence, something that not many doctors have seen;

“For You created my inmost being, You knit me together in my mother’s womb”;

the symptom of Amyoplasia Congenita Disruption Sequence is Arthrogryposis or multiple joint contractures;

“I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well”;

what this means is that because of a “vascular accident” while you were in the womb due to unknown causes, you cannot move or bend your arms, legs, knees, wrists and other joints;

“My frame was not hidden from You when I was made in the secret place”;

your parents have a special, physically disabled little girl;

“When I was woven together in the depths of the earth, Your eyes saw my unformed body”;

when they thought of all the challenges of parenthood, they never imaged having a daughter who may not walk, write, ride a bike, type, do sign language or hold a spoon;

“All the days ordained for me were written in Your book before one of them came to be”-Psalm 139:13-16.

We had our orthopedics appointment

Thursday, October 25th, 2007

We had our orthopedics appointment! We called ahead of time to see if they were closed for the fires. Then we covered the baby, held our breaths, brushed the ash from our car and drove through what looked like Armageddon. What felt like little drops of rain turned out to be tiny bits of ash from unusually dark skies.

I was so nervous in the waiting room. The other kids had broken arms, but they were jumping around and happy. I don’t know why I thought other people in the waiting room would have Arthrogryposis. They were all soccer injuries or whatnot.

These people really seemed to care. They kept asking questions like, “Has she gotten a hip ultrasound?” No. “Has she gotten x-rays to see what’s going on?” No. “Has she had a genetic exam?” Not really. “Has PT told you how much mobility she has in which limbs?” No. This was actually the most thorough exam she had received since the diagnosis, and we told them as much. The physician’s assistant just shook his head and scheduled a hip ultrasound that was there in less than ten minutes. We gave her a pacifier for that one since it was mostly just uncomfortable and the gel was cold. When the lady first put the cold ultrasound on her tush, Laelie’s eyes got really wide and that pacifier got sucked pretty furiously. That’s cold, Mommy!

They also moved her body parts and wrote down how much movement she has in each limb. (Not as much in some, more than we thought in others.) They also explained EXACTLY what they were doing instead of just moving my baby and taking notes like they did in PT. Now I know that I have total rights to make doctors explain exactly what they’re doing and stop immediately if I don’t like it. Some doctors just move all her little joints to see how far they can go for no reason other than curiosity (at least as far as they explain to me). These people were great and I appreciated them.

We were getting casts that day. No waiting seven more appointments. No having to call and harrass anyone. No need for ambiguous “approvals.” We were told that these casts are usually done at one week of age! We don’t think waiting this long cost her much, but it’s infuriating that our insurance dragged their feet so much even when we were calling twice a day everyday.

The doctor came in and we talked options (finally!). They decided not to put her arms in casts and to try splints instead at our occupational therapy visit (on the 29th). It’s discouraging that her arms have not once moved on their own. Hopefully we’ll know more at OT… unless it is like our PT appointment… grrr.

We decided to try and fix the club feet with the casts and stretch out the legs since leg movement is less important. If we ever want her to walk, she may just need the legs straight and do a kind of stilts-walk. Whereas the doctor put a lot of emphasis on her learning to type so we’re keeping casts off her wrists. She also wanted to put off surgeries and x-rays until Laelie was a little older. I like how the doctor said, “Let’s get her typing!” and “We’re gonna get these little wrists going this way so she can type!” It was better than the usual, “Well maybe if we do this she may gain a small amount of mobility bla bla bla,” that we get from other doctors. I felt hopeful.

While they were casting her, she cried and cried. The doctor kept telling me how necessary it was and explained exactly what the discomfort was and that she wasn’t in terrible pain. The physician’s assistant started singing to Laelia when she wouldn’t stop crying. He had a nice voice and babied it up a bit. Laelia was still crying, but she stared right into his eyes and I bet she had her first crush right then and there.

We hate our casts. It’s like the discomfort of having braces on your teeth. It’s not a sharp pain, but it is a big discomfort. She cries more now and is having trouble eating. She went 12 hours with me barely getting anything in her mouth. They think it’s just because she’s uncomfortable. We also have to check her little toes all the time to make sure they stay pink. The bad thing about club feet in Arthrogryposis patients is that it goes back after the casts are off. So she could be in and out of casts since it’s not a true clubbed foot situation.

Working with a baby who for all intents and purposes had no legs (since they were so curled up and tight) to having these long, awkwardly wide, heavy and hard-as-a-rock legs is hard to navigate. Picking her up and having her feel the weight of the casts makes her cry. Breast feeding is so impossibly awkward now! The casts are hot and the temperature is so hot now that we were warned she would get heat rashes. The casts are going to be taken off and replaced every week. It’s looking like this will be hard.

But it is so nice to look down at my baby in her box (as you can see in her photo) and have this baby who has legs. She looks more like a person now instead of a sack of potatoes.

No, we’re not in the fires

Monday, October 22nd, 2007

No, we’re not in the fires. We haven’t evacuated. Actually we’re in a good spot next to Qualcomm Stadium which is the evacuation site so people are actually coming to us. A few friends of friends have lost their homes and we had some visitors that couldn’t come see us today since they are leaving the highways for evacuations. We have a bag packed for baby, but I’m not worried at all since the fires are east and north of us. Yes, the fires are kinda close, but they are also far enough away to give us plenty of time to get to the beach if we need to. We’re trying to stay off the cell phones since everybody is trying to contact relocating friends and family. So if you’re calling, call the home phone. For more information about the evacuations: http://www.sandiego.gov/newsflash/firealert.shtml.

Also for those of you who have asked about Laelie’s booboo on her knee, no, I didn’t drop her. She actually had that when she was born. I don’t know how, but she wasn’t moving and she was rubbing up against my ribs or something and it broke her knee open. So she was bleeding inside me which is a nasty thought. You can actually see the injured knee in the photos section. It’s her Playboy naked picture. :) It’s healing well and we have special medicine for it.

Also for those that have asked we FINALLY have an occupational therapy appointment! When we thought it was taking forever to authorize the appointments, it was *actually* taking them forever to *tell* us they authorized the appointment. If Charley wasn’t calling these jokers everyday, we would still be waiting for them to remember us and schedule an appointment. Just shows that no one is looking out for Laelia except those who love her. Since every day we wait on this stuff means she gets less help and less mobility for the future, it really makes us angry. But we have the appointment set for the 29th.

According to the specialists, we are putting her in the best care at the best hospitals. I’ve been assured by other parents that once you get past the red tape, bureaucracy and people who *don’t* care, then you get regular appointments with doctors and therapists who know you and have a relationship with you and *do* care. (Except for the occasional one who sees her as a pile of body parts.) Just got to jump this hurdle first.

Ah, Sunday

Sunday, October 21st, 2007

Ah Sunday. We can’t do anything. No pressure. Doctors are at home. Hospitals and clinics have turned on their answering machines. Weekends are the times when Charley feels most relaxed since he can’t do anything.

Charley (my hero) bugged enough people and got Laelie an orthopedics appointment on Wednesday. So Laelia *might* get casts on her feet (or legs?) as early as three days from now.

It’s weird that we fight so hard for these torture appointments and then hate them when they are approaching. I’m really nervous about the appointment. Our daughter cries all the time now. This is different behavior than her first week or two of life. She cries all night long and at odd times of the day. She cries when she’s burped or moved or looked at. I’m worried she’s not a happy baby. I think once I stopped taking major pain medication for the C-section, then she stopped being so drugged and started to feel everything. (She cries WHILE she’s nursing!) I don’t think she’s in pain just lying in her bassinet… but she’ll scream anyway. I’m so exhausted. I don’t want to put braces or casts on her and have her scream her frustrations. I just want her to be happy, but I also want her to be able to have more movement by the time she’s 17. Will she thank me or hate me?

Laelia’s doctor told us she would sleep 20 hours a day. By my calculations she sleeps 10 hours a day, never for more than two or three hours at a time and only one or two of those hours happen at night. They say she has her days and nights mixed up. We’ve tried everything to switch her back from making it dark during the day so her eyes will stay open more (her doctor suggested) to having it bright during the day and dark at night.

I think she’s afraid of the dark. We started to leave a low light on all night long. When I turn off the lights at night she will fuss and jerk even when she’s safely in my arms.

She is always hungry now. They call it a growth spurt. She’s literally 45 minutes on and 45 minutes off most of the time. So I’ll start breast feeding at, say, 3:00 AM and she’ll finish at 3:45 AM between burping and so forth. Then Charley will change her diaper and I’ll spend twenty minutes getting her to stop screaming. Then I’ll catch a few minutes of sleep and she’s crying and hungry at 4:30 AM. She’ll eat until 5:15 AM. She’ll cry while I rock her. I’ll catch ten minutes of sleep. She’ll need to eat at 6:00 AM and how does she let me know it? She cries!

So my daughter is 18 days old, but it only feels like 18 minutes… under water. :)