Archive for April, 2008

Grandparents

Saturday, April 26th, 2008

 

Grandpa thought I made a good car model.

We went to the beach and  to the car museum. We ate our first veggie and  played puzzle quest for hours. We went on walks and went to the doctor’s office. We had lots of fun with grandma and grandpa!

While I was at work, the grandparents kidnapped baby and took her to the car museum. I just finished going through a little over 100 of their pictures of cars to find the one I used at the top of this  blog.  Grandpa was distracted by car heaven. :)

When I went to pick them up after work, Laelie gave me this big goofy grin. Sometimes Laelia looks wise beyond her years,  so it’s grins like these that let me know there’s an average,  goofy baby lurking beneath those  typically wide, intelligent  eyes. The grin did not go unnoticed by the ticket lady at the museum. She commented, “Look how that baby lights up when she sees her mommy!” I can’t tell you how good that felt. It makes me feel like I’m queen mommy! I walked out of there with a huge grin on my face too. :)      

Laelie’s  orthopedic appointment was another outing we had. It was  something I set up a month in advance so it fell during the grandparents’ visit. This appointment was the one where Scope (who makes the braces) and our orthopedic doctor (who prescribes the braces) could get together and hash out what  we’re doing with Laelia’s poor feet. Well I had to wait an hour and a half because  our doctor  was booked up and Jesus from Scope couldn’t wait that long. Laelie’s grandma and I  set up Laelia’s play gym replete with  PVC piping, arm restraints and toys right on the floor in the waiting room.  If we had to wait, we’d wait in style! :)  We also made friends with a mom and her teenage son who were also  waiting for the same  doctor. The mom was so nice. She cooed over baby and when their time came to go in, she offered me her spot! That never happens.  Last time we were in this waiting room I  overheard  a daughter say to her mom, “But mom that’s lying!” Her mom  then dragged her to the corner and reprimanded, “Do you want us to have to wait for the doctor?!” It’s people like that raising people like that who make  my experiences with doctors’ offices  harder.  So to be offered someone’s spot…! I can’t tell you how great that is.

Laelia’s  shoes don’t work right. They slip every time you pick Laelie up and they leave giant red marks.  We’re trying to get some AFOs with a Dennis-brown bar, but  even though the prescription was written for them, they weren’t sure they could be built with a removable bar. We’ll see.

It was nice to have visitors. I already miss them.  I told my friend that I had kicked out the grandparents yesterday,  to which all she had to do was raise an eyebrow before I admitted, “Okay, so I begged and whined for them to stay.” :)

Here are some random videos and pictures taken from grandma Christina’s  camera of baby doing baby-type things. Enjoy.

 


Throwing sand at grandma.


Goofing off with grandpa. (More like watching grandpa goof off. :))

Life’s a beach

Wednesday, April 23rd, 2008

 

After spotting her shadow, the baby crawls back into the sand indicating six more weeks of winter. :)

We went to Tourmaline Surfing Beach because tourmaline is Laelia’s birthstone so we figured it would make a good very-first-beach-ever visit. Besides the wind, it was a great visit. I tried to find some shade and ended up going behind a rock with baby while her grandparents continued to hunt shells. I later got kicked out by a lifeguard patrol. Even though I had a bottle in my hand I wondered out loud, “Huh, I wonder where you can breastfeed on this beach if not here?” He retreated real fast! :) Ha, good times. Men are silly. Anyway, here are some pictures of our trip. Enjoy!

Glamour girls.

First shell found!

Wrapped up in Mommy’s sweater.

Getting sand everywhere! Even all over  my face!

Wiggling toes in the sand.

Tummy time on the beach by the cliffs!

Church

Sunday, April 20th, 2008

 

Sharing secrets… Don’t tell Mommy!

I volunteered in the nursery at my husband’s church on Sunday. Laelia has lots of friends there. I offered to change all the diapers since I have been doing that a lot lately, and you know what?!! They kicked me! I wasn’t used to that! :) Who knew changing diapers could be a challenge. :) They also crawled all over the place! Take away all the therapy and doctors visits and my baby is easy smeasy!

 

Oooh hair. Let’s all stare at that!

Oooh a ball. Everybody stare at that now!

First food: squash

Friday, April 18th, 2008

Squash! Mommy skinned it, boiled it, cooled it, stuck it through the grinder  and then forced it down her daughter’s throat. After all that Laelie Bug only got a tiny little bit in her mouth. Where did the rest end up? Right down her shirt! :) She did better the second time. I had her practice with an empty spoon and cheered every time I could put it in her mouth correctly. Then I added a little squash and it worked a lot more smoothly. But for a look at our first attempt, see dad’s (grandpa’s)  video documentary below. It’s a little long, but you get the gist of  how the experience went in the first few seconds. Enjoy!

Poor baby

Thursday, April 17th, 2008

 

 

 

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. :)  

Ask your mother

Tuesday, April 15th, 2008

I am so mad! I just got a letter from iHSS. They are denying us, without sending someone over, because we need to be approved by MediCal in order to receive iHSS! The only reason we’re doing iHSS is because we were denied by MediCal!

It’s our government’s version of “ask your mother.”

Hey Mom, can I…

Ask your father.

Okay, hey Dad can I…

Ask your mother.

Mom, Dad says…

I’m busy, you need to have your father deal with this.

Dad, Mom says…

I said to ask your mother!

Acchhhhhhhhhhhhhhh!

I am so sick of getting doors slammed in my face! Can anyone think of another way to get a $#%@*& MediCal waiver?

Placerville, a trip in pictures

Tuesday, April 15th, 2008

Forced to move by a window after mommy just finished buckling me down, a little annoying. Having to plug  my ears with  a blanket since the engines made  me cry, not comfortable.  Having  my  braces set off the airport  metal detectors… priceless.

I spent all morning Friday downtown at the social security building. I got lost on foot trying to find it, was ten minutes late to my interview then ended up sitting between one crazy lady talking to herself and one foul-smelling  man who  announced he had ring worm. When I was called in for my interview, two women complained loudly that “that girl” somehow cut in line. And, after all that, I was denied in less than ten minutes! I asked the lady what I could do and she said my last chance was iHSS. I tried to get this interview with SSI done over the phone but that was not an option when I set it up. Then when I get there I find out that I could have absolutely done it over the phone! Accch! Then we’re in a total rush to get to the airport with baby on time. Charley got off work ten minutes before we had to leave. We arrived  late at night  after our flight was delayed and were totally exhausted.  

zzzzzzzzzzzzzzzzzzz

When family members would ask where baby and Charley were, I would go into the back bedroom and take another adorable shot of the two of them  to show whoever asked me. Baby got to fall asleep in many new, exciting places. She fell asleep on her Auntie Em several times.

My Auntie Em

Laelie also got to meet her cousin, Abby. The last time they met was when Laelie was still in my tummy. Abby showed her affection by smacking Laelie every chance she got. Laelie just stared at  Abby adoringly. At one point Job and I switched babies and I got the wiggly one and he got the still one. We were both amazed by the other. I can’t tell you which one is more work! Abby was not guaranteed to live past a few months old. Just one more evidence that doctors don’t know everything.

This is my *ouch* favorite *ow* cousin, Abby!

It was also fun to watch my dad play grandpa. He spent lots of time interacting with his favorite grandchild. Okay, well, his *only* grandchild. :)


And finally Gram was back in Placerville, where she belonged! She was buried in my favorite cemetery. It’s the perfect cemetery because it’s totally overgrown and wild. If not for the gate, you would walk through and trip over a stone in the brush and then realize  you were in a grave yard. Gram would have loved to do gardening on this place! I can see her with those  gloves of hers breaking her back here.  My grandma, Wynema, spent some time the day before clearing out enough  weeds so we could stand near the grave. Some of us even stood on graves, the names  on them  had  eroded with time. Then we went to the memorial at Gram’s church. Laelia laughed and cooed and fussed and made every kind of noise you can imagine through the whole thing.

Then on Monday, baby, Charley and I  went to antique stores like Gram and  I used to  every Sunday before we’d go  volunteer at the rest home. She would walk me through and point out things I’d never heard of that were staples of her existence once upon a time. I was looking down at Laelia and  considering how amazing it is to celebrate new life while at the same time  grieving life lost.  I enjoyed our trip, but I wish I didn’t miss Gram so much.

Picking up Christmas wrapping paper with Gram.

Puppy helps Laelie with her therapy

Friday, April 11th, 2008

Since I won’t be able to blog while in Placerville, I couldn’t leave without passing along this video. This is Puppy our kitty helping Laelie with her occupational therapy. I call it, “Free babysitting.” Enjoy!


No, baby you do it like this. No, like this. Here I’ll show you. Here I’ll show you all of them. Just… out of my way.

And yet life goes on

Monday, April 7th, 2008

     

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.

At a loss

Thursday, April 3rd, 2008

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.