Archive for November, 2007

Laelia’s First Grin!

Friday, November 30th, 2007

Brought to you by Grandmas Geri and Christina and the wonderful digital camera (this was before I broke the card). :)

I just happened to have the camera nearby. She started grinning when I was playing with her. This is the first time that has ever happened! Then she was all smiles. This happened about two days after we got back from our Thanksgiving vacation. What a great thing to be thankful for! For more smiles and grins go to the link on the right called  Pictures of Laelia! My favorite smile is in the Our First Real Smiles album and it has the  caption, “My first real smile still!” Enjoy!

If It’s Not Fires Then It’s Flooding…

Friday, November 30th, 2007

So who wants to hear about my crappy day?! Everyone? Great!

It’s stretching into two days actually. It all started Yesterday (Thursday). Laelia had a doctor’s appointment to get her shots. Charley went to work and I started to get baby ready for the trip. Then I remembered that Charley had her immunization record and insurance card. So I call him… eight times. He says if you listen to all the voice mail messages back to back they get increasingly more desperate and hilarious. He swears he was in a meeting. So I go to the doctor and don’t have any paperwork.

I get there and it turns out they don’t know if they can do the shots because they do them on the leg which is covered in casts. They also can’t weigh her or measure her. The doctor looks at her and says there is enough upper leg (barely) to do the shots. But they end up pulling on the casts. Then they decide to weigh her anyway  in her casts and she is 11 pounds. So I’m worried she’s not gaining enough weight since the casts are heavy. Laelie starts to smile and play right before they give her the four shots and feed her the nasty medicine that she gags on. Now she’s screaming.

I get home and.. no wait I get back to the parking lot and something seems missing. That something turns out to be my license plate. It got stolen while I was in the office.  I wait forever for the manager to come over and tell me there’s no way I can prove that it was stolen from his parking lot. I thought these lots had security. The other three parking lots on this block  have security but this one doesn’t. I can park in those, but only this lot can be validated. He then refused to waive my parking fee for all the trouble and waiting I did. So I’m a liar and had to pay the parking fee with a check. Now I have to call the police and go to DMV.

While at the doctor’s, I got a great picture of Laelie being held by her Pediatrician. Then I got home and put the memory card from the camera into the card reader in order to post the picture and in doing so, snapped the card in half, which broke it and I lost all the pictures on it! Accc!

Then Laelie starts to/continues  to act funny. I change her diaper and accidentally rip off one of her band-aids. She cries more. Then lots of little things happen: I break  my nail,  Laelie has trouble eating, I skip two meals, the house gets messier. Charley comes home and picks her up and she starts screaming like she’s in a lot of pain. I yell at Charley.  Charley swears he didn’t do anything he doesn’t always do. She won’t stop crying.

She wakes me up all night long. Around 5am I notice that she is hotter than normal. I take her temp and she has a fever. I give her Tylenol (I managed to cut my thumb under the nail on the packaging *groan*) and I change her out of her warm clothes.   We wait it out. Around 7:30 the fever breaks. She’s still really fussy. I check her toes and fingers just in case. That’s when I notice that the toes on her left foot have retreated into the cast. Oh no.

We call the doctor (orthopedic) and she’s on vacation. We get an appointment with another orthopedic guy but not until  11am. I get there early and have to wait over an hour while my daughter is in pain. Sure enough the cast slipped. It bent the toes and caused some damage–the whole foot looks terrible. She has an open sore on her leg from it coming down and cutting her. It had to have been terribly painful.

It’s raining. A lot.

We fix her leg cast and she cries and cries. I am carrying a diaper bag,  car seat  and umbrella. I have to walk three blocks from the nearest parking lot to the office. They charge me for the visit. They charge me for the parking. By the time I get back outside it is raining horizontally. While managing the trek back to my car my umbrella (covering the baby not me) gets blown straight up and breaks. I get to the parking lot (uncovered parking lot) and realize that some dummy has parked right up against me. I can’t get in the car. I can’t get the car seat in the car. I am stuck out in the rain far away from the building with a seven-week old in a car seat with a soggy blanket and broken umbrella  and looking like I fell in a lake. I managed to bend my umbrella back the other way so it at least covered Laelie’s face, climb over a railing (over a cliff) and get my door open enough to get the car seat in sideways. Then I strapped her in the back, crawled back out and got in the driver’s side while banging my door against  a metal post. It took ten minutes. Oh and did I mention that in San Diego there is no such thing as rain or cold weather? I’m one of the dummies that believe that and I’m in flip flops, a short-sleeve shirt and a long skirt that is covered in flood waters to the knees. Also no one in San Diego prepares for that much rain. A lot of the roads are flooded and I have to take long routes around rivers in the roads. There  are flood warnings all over southern California. Laelie picked a great day for her cast to slip.

We think that we pulled the cast down a little too far to get those shots and then when  I changed  her diaper it slipped more. I thought it was the band-aid so didn’t know. Then when Charley picked her up it was the last bit that did it. Her foot looks so bad. I just sat and cried in the clinic. Good thing we had that Tylenol.

I keep thinking about what I would do if this all happened while I was still at work. There are so many doctors appointments on top of something like this happening.

While on my way back from the clinic, I got a call from the daycare I’ve been drooling over called Together We Grow (http://www.togetherwegrow.net/). It turns out that we can’t afford it. They say Medicare will help, but we  don’t qualify (but we’re going to try anyway). There are two other kids with her condition there. It sounds really great. I’m going to try to get in anyway and take a tour. They suggested meeting with one of the other moms while I’m there. Every doctor Laelia has been to knows this mom and say she’s great. We’ll keep trying to get her care.  I know without government help these care facilities are really a long shot.

Let’s see. Oh I ran out of gas on my way back from the doctor. Forgot to mention that. I was near enough to a gas station so that was fine. The water running through the gas station from the flooding covered up to my ankles. (Why did I wear flip flops???) We just got home and I  went to get  a warm blanket from the dryer to wrap around Laelie.  But my dryer broke. Laelia also has a fever again.

So I’m sitting here wrapped in a blanket with my daughter,  typing all this out and laughing my head off. I’m waiting for the rampaging elephants to come though here any moment.

Thanksgiving

Wednesday, November 28th, 2007

We had a good Thanksgiving! But, wow, was our  schedule busy!

Monday: Got casts done.

Tuesday: Recovered from initial cast pains.

Wednesday:  In the morning we flew to Sacramento. By evening we were in South Lake Tahoe with Charley’s family. That night we drove home (baby screamed for 25 solid minutes, calmed down and then cried another 4 solid minutes… I   counted).

Thursday: Thanksgiving! We did the traditional meal at Grandma Wynema’s and movie afterward (while baby got babysat). Baby got to see lots of family for the first time.

Friday: We did the traditional ‘eat leftovers’ meal and played a game where Charley knew almost all the answers. And we watched lots of Star Trek.

Saturday: We went to VIPs where Dad promised (back  when I was pregnant and couldn’t have it) all the sushi and seafood I could eat! Then we went shopping for an early Christmas present from Dad and Grandmas Christina and Geri (Christina’s mom) of a digital camera. Lots more pictures of baby now! We also hung out with Auntie Em and Uncle Daniel and played guitar hero.

Sunday: We went to church at Gold Country and saw lots of friends and the new building and new nursery! Daniel’s parents came over to meet Laelie too. Then the whole family, Emily and Daniel included, played the dice game.

Monday: We left early for the airport and flew home. Then when we were  driving to our doctor’s appointment, they called and cancelled/rescheduled for Tuesday so we went home and  got to sleep!

Here are some pictures highlighting the things  Laelie learned on our trip:

~

We learned that Mommy will cuddle me if I stay cute too long.

Same goes for Grandma Wynema and Grandpa Dean!

We learned that Daddy and Grandpa would rather relax than cater to my every whim… especially when there are so many other family members that are willing to!

We learned that it can be dangerous to give six girls (and Daddy) colored markers!

We learned how to be fashionable like the big kids.

We learned that getting lots of love…

… can make little dogs jealous!

And the most important thing we learned…

That Christmas shopping is best done right after Thanksgiving!

 

~  

Hope you all had a great Thanksgiving!

Day One On My Own

Tuesday, November 27th, 2007

So Charley went back to work today. Last night was so hard without him. Laelia slept a little, but mostly demanded lots of attention. I would wake up after ten minutes of sleep feeling her eyes boring through me. Then it was: hi mommy! are you awake now? are you going to play with me?! that would be so much fun! let’s play right now! yeay!

We got back from Placerville last night. I think Laelia misses grandma Christina… or maybe that’s just me… around 6am. :) We’re tired from all the traveling. I hope all the traveling wasn’t too hard on her. I’ll post another blog about Thanksgiving as soon as I get these pictures off the camera.    

I did end up getting her up, dressed, fed and the laundry started before heading out to her doctor’s for casting. The doctor left early yesterday so we got home from our trip and were on our way to the hospital when they called to reschdule for today. So it was me by myself with no money for parking (oops) and ten tons of baby stuff (with no husband pack mule). Her left wrist looks good and will come out of the cast early. Her right wrist looks worse than it is (with a large bruise and bent thumb), but will need a lot more work. Her right foot looks better and will probably get surgery soon. Her left foot lost a toe (under the foot, it didn’t fall off!) and is not as good. Charley and I want them to cast above the elbow on her right arm next time, but bending the elbow like we do for PT so it anchors but also is helpful. Laelia cried through the whole thing and then slept soundly after her lung workout. There was a ten-year old girl getting lower body casts off after what looked like a car accident. Every time that little girl cried, Laelie would start. I don’t know if it was empathy or foreboding.

We got home and got the mail where this letter was waiting for us:

Dear Mr. & Ms. Wesley,

This is to notify you that I am closing Laelia’s case with the California Early Start program at the San Diego Regional Center. This decision is based on the fact that she is not eligible for services at this time due to her diagnosis which is considered solely low incidence. If in the future you have concerns regarding Laelia’s development bla bla bla contact us again bla bla bla.

We were expecting that since she is not developmentally disabled and she doesn’t qualify for a ton. So why did it feel like a punch in the gut? I’m still trying to find some government assistance for her care since I’m told that’s why we pay taxes. According to the California website we don’t qualify for SSI, but other people are saying we maybe should apply anyway and when denied, get a lawyer. After today alone with the baby, I don’t have the energy to deal with it all. I’m tired!

Well Charley walked in the front door from his first day back to work only to find me with a half-naked baby (her clothes were covered in plaster from casting), a messy house, no dinner and the lights off. Why were the lights off? Because I was too busy with the baby to turn them  on when it got dark. It just seems like three full time jobs, especially after casting.

So today was hard. She went through a million diapers and she becomes a different kind of awkward after each casting. And the whole time I felt guilty for not holding her more or playing with her. There’s just so much to do. I still need to do her OT and PT and give her a sponge bath, um, and get eight hours of sleep someday. But on the positive side, we did it. Laelie and I successfully managed to stay alive when left to our own devices. It’s a miracle. :)

Monday, November 19th, 2007

Charles here.

We got Laelia’s casts changed again today. My wife asked the doctor how far the knees could get straightened out. We hadn’t seen a ton of progress, and we were wondering if her legs would be straight enough for her to walk.

“Oh,” the doctor replied, “we haven’t been trying to straighten out her knees. We just need to anchor the casts there while we straighten out her club feet. The legs tend to stay in whatever position we move them to without a lot of flex room, and the question right now is whether she’s going to be spending most of her time on her feet or in a wheelchair. Right now I’m thinking that she’ll be wheelchair-bound, so her knees are at about the perfect bend to accommodate that. But we can straighten them out with surgery later if it looks like she’s ready to walk.”

Alexis and I both had understood from other sources that the general treatment for these kinds of legs was to get them totally straightened out, and that’s what we thought we had been doing. How did we miss this?

And is the doctor right? Is my daughter never going to be able to walk, even with braces or crutches?   She (the doctor) tossed off the comment so casually.My wife and I were both just blindsided by it.

I feel like I can’t give up on my daughter so easily without even giving her a chance to prove herself. If doctors can straighten the knees, then they can bend them again if necessary. I’ll do research, but it looks like we may need to prescribe a new course of action for our orthopedic doctor.

The doctor might be right for all I know; our daughter could be bound to a wheelchair for the rest of her life. But I can’t believe that–not yet, anyway. God, protect my daughter. I need to know that whatever happens to her happens because You allow it to happen, and not because You fell asleep at the wheel or didn’t love my daughter very much. Heal her, if You are willing.

Belly Button!

Saturday, November 17th, 2007

Our umbilical cord finally fell off! Hurray! It’s nice to see it gone. Now we can do tummy time!  It was  hard  to be so far behind on  a mile stone like this. Her umbilical cord should have fallen off weeks ago. She is already going to miss a few mile stones because of her disability so it was  hard watching her  miss one that had nothing to do with her disability. It’s strange how our emotional states (Charley’s included) were tied up with a bit of dead tissue. I finally twisted it off today (which made her squeak and then fall back asleep). It was hanging on by a thread. Now it looks so much better and I won’t have it’s mark on me when I hold her against my tummy. Yea! We have a belly button now!

Before

 

After

Purple, no longer our favorite color

Friday, November 16th, 2007

You know the song, Red, Orange, Yellow, Green, Blue, Purple? Well that is the title and the entirety of the lyrics as well. It was a song I learned in kindergarten which teaches that the correct order of rainbow colors from top to bottle are as follows: red, orange, yellow, green, blue, purple.

So I was nursing Laelia when I noticed terrible bruising on the top of her head. I yelled for Charley who was in the kitchen and could see the dark purple  bruising from across the room. We both panicked. How in the world did she get bruising on her head? Does this have to do with her diagnosis? Is she hurt? Will it cause brain damage? Did she fall? How did we miss this? When did it happen?

It wasn’t until I set her in her  make-shift, cardboard box bed  and she started to wiggle that I discovered the source.  She snuggled into her box causing her head to rub against  it. Inside her cardboard box I had drawn pictures in crayon. The rainbow  drawing is  directly above her head and  has a prominent bottom rung made of purple as per my education. The purple is now slightly smudged. :)

Sorry but we save these programs for other disabilities

Friday, November 16th, 2007

Wednesday Laelie was really fussy so I took her for a drive. It is so nice to get out of the house, but so hard to actually leave. We drove past Children’s hospital and all the way to DawnSignPress. So I stopped by DSP to introduce the baby. She slept the whole time! Some people were joking about me just bringing baby to work with me and doing my job with her in my lap, but I don’t think they understand that whoever that cute, sleeping baby in my arms was, it wasn’t mine. :) My baby is a fussbudget!

Then yesterday (Thursday) I went out to lunch with DSP folks for a customer service appreciation thing. It was weird to be without Laelie and also nice. I could forget about being a mom to a demanding little girl for a few hours. It was so nice to see my friends again. It’s also nice to be able to say that I work with my friends.

I am really hoping to return to work in January. It would mean a lot to me. I know it depends on quite  a few things out of my control. For one thing, I would need to make sure Laelie had the care she would need everyday. Charley and I have moved our schedules around so that Lays would only need four hours of care a day: 9:45am-1:45pm Monday through Friday. I need someone who can do her physical therapy (the gentle version) at least two times during those four hours. I also need someone who can manage a baby with casts (although hopefully her arm casts will be off by January). It would also be nice for that person to come to our home instead of having to drive Laelie somewhere. We’re also trying to find someone who will take around $150 a week.

Charley doesn’t like the idea of only having one person come over since if that person gets sick or needs a vacation, then we’re out of luck. Plus  there’s the risk of someone having no accountability and taking off or someone having our key and letting people in. And then there’s the possibility that this person may find another job or need to quit and then we’re stuck.

The alternative is to send  Laelia to daycare with other kids where we cannot guarantee she is getting PT, or individual attention, but at least they would feed and change her and also there would be accountability.

I remember when I needed watched  when mom was still at work, we would just go to grandma’s. Oh how I wish my mom  was alive and living down the street.  I hate that we live so far away from family.    

I thought the government would help with this. I thought that because I used to do that. I went into the child’s home (he had down’s syndrome) and the mom trained me in what to do. The government paid me, so I wasn’t a burden on the family. I couldn’t work more than 20 hours a week if I remember right and that’s all Laelie needs. Really that was the best job ever since I loved that kid! He called me “Nec’as”. I remember his bus driver grinning at me saying, “I don’t know any one named ‘Alexis’,” as Benny (the boy I took care of)  was yelling, “Nec’as!!!” from his car seat. :) Anyway, I knew that it was possible to get help, but I’m finding even though she is severely disabled, I can’t get any. She is twenty times more difficult than Benny  ever was. Really with Benny I just had to trick him into  eating his medicine-laced yogurt before it turned to goo and discourage his alter ego: Naked Boy! :)

Well we spoke to some members of Early Start and it doesn’t sound like we can get government help. They suggested the YMCA but anything we did  would be  out of our pocket. Good luck finding someone who will do specific PT for our special child during day care. If our child had one of these other disabilities then they could do something for us. Well her’s is rare and doesn’t effect the brain (directly) so too bad. I’m open for options but don’t know where to start. So far Google hasn’t been much help.

I just pray it will all work out; that Laelie will sleep at night; that Laelie will allow feedings three hours apart; that we can find help or the right daycare; that I will know when to return to work; that Laelie will hit milestones like potty-training and feeding herself so childcare will not be so hard to find in the future; that I will get some sleep and that I’m doing the right things for my daughter.    

I’m too cute for day care!

It’s 11am and my baby is finally asleep.

Friday, November 16th, 2007

So Laelia has decided that she will not sleep at night. She cried from around 1am to around 6am. Of course she probably was still crying after that,  but that was when Charley’s shift with baby started and he took her downstairs.

After making sure several times that she was warm, fed, changed and as comfortable as possible, I finally just gave up, put her on the bed next to me, and cried with her. I have this terrible feeling that this has nothing whatsoever to do with her diagnosis and everything to do with upset/colicy baby. I think she finally just falls asleep from exhaustion.

I got mad at her for the first time in my life last night. It was a scary feeling. I had to put her down with Charley and walk away. Not that I would  shake her or something, but I didn’t want her to react to my mood. I know babies can sense parents’ moods sometimes. I didn’t sleep the night before and was already tired. Charley offered to deal with Laelie around 2am, but he was falling over from lack of sleep and we didn’t trust him to carry her around. If I knew that everything we suffered last night was due to her casts, we would have soaked them off immediately. But there’s no way to know. She’s asleep now with tears streaking her face. She has not slept more than two and a half hours at a time (and that’s the record) for a long time. She also demands food every  hour during the night.  Now that Charley and I are on shifts with her and she’s taking bottles better, we can finally handle this better. Last night was hard just because life has been busier and we weren’t able to sleep.

I’m really upset about my cousin Nathan. After his parents  left last night I was able to cry a little. I’m not breaking down yet because there’s still this huge hope that it will all go away. I had the same feeling after they diagnosed Laelia. I just kept thinking it could still be a mistake. I thought the same thing when mom died for that matter. (Maybe they mistook her for someone else.) My Psychology degree is screaming DENIAL at me, but this helps me cope.

Charilyn brought Laelie bug some clothes. She is adapting them to fit around her casts. Hopefully other people can help with this too.

I’m getting a lot of stories about how Nathan and Josh were when it came to feeding times. I guess some of this runs in the family. I wonder how bad I was. I take solace in the fact that someday Laelie’s kid will drive her crazy. :)

I hate sleeping!

Welcome

Wednesday, November 14th, 2007

Charles here.

Welcome to the new home for all things Laelia-related. CaringBridge was helpful up to a point, but we’re ready to cast off its limitations and go for a full-fledged blogging platform. Huge thanks go to good friends Bolt and Fjord, who had this site up and running about two-and-a-half hours after I asked for help.

You’ll note that a few things are missing from the site, like a photo gallery and guestbook. Those should be coming very soon. In the meantime, you can use the box at the right to subscribe to email updates, or add us to your favorite RSS reader. Also, you can now comment on specific posts directly.

Thanks, as always, for all your prayers and assistance. We appreciate it.