Blood and Guts

We’re so tired all the time lately that I just broke down crying in front of a group of people I don’t know this morning. Thankfully they were wonderfully sympathetic. Laelia’s foot issue is worse. In fact I’ve decided to include some images of her foot that are disturbing so maybe you’ll want to hide the monitor from younger viewers before scrolling down. Her AFO (ankle foot orthotic, aka “special shoe”)  on the right foot has caused a crater that just gushes blood, making it unwearable.

That spot was getting worse and worse, and we were trying everything we knew  to keep the foot in the AFO (and keep it from re-clubbing). But nothing worked: not band-aids, “working” the straps, a cotton ball between the sore spot and strap, putting the strap as low as we could off the sore spot–nothing. So finally after the blood gyser  last night, we gave up and left the darn  AFO off her all night. It was the first full night’s sleep she’s had since January 7th. I wish I could say the same for us, but we were up worrying about bleeding issues, re-clubbing issues and dealing with guilt. With regular clubfeet we wouldn’t worry, but an arthrogryposis clubfoot likes to curl up very easily. They are the most stubborn feet! And we need that AFO to avoid surgery!

As you can see in the above pictures I put her back in her old AFO today that doesn’t do much for her and is too small,  but it’s better than nothing. There’s a hard piece of plastic between her foot and the strap on the old shoe so it doesn’t hurt that area as much. We are going to try and meet with Laelia’s busy pediatrician tomorrow (Monday the 31st)  so we can get a referral to an orthotics company ASAP  and try and “fix” the AFO. Her AFOs were made in Philadelphia so it’s not like we can march over there and demand they fix them. (PS: I had found the old AFO in my unpacked bag I had taken to Philadelphia. I haven’t found the time to unpack in almost three weeks!)

In other news, CCS has not moved an inch on our PT appointments. They have just sat on our paperwork with their thumb up a delicate part of their anatomy. I’m sick of this. We are waiting for no reason! I would fight this  tooth and nail and make a big stink if I knew how much longer it would take, but they won’t give me any idea! I would just hate to complain and then have them call me the next day saying they were done.  But it’s getting ridiculous waiting for people to just stamp an approval on our case. We already know we qualify for their medical therapy program based solely on our diagnosis! So why has this been so hard? And it was suppose to have been rushed since she got out of casts three weeks ago!!! And she was suppose to have been getting physical therapy two times a week for the last three weeks! So frustrating!!!

Since CCS are punks, we have had to try and push our  insurance to move faster. Our case manager, Gretchen, never returned my calls. Ever. Thanks Gretchen. But thankfully we got a new case manager through CPMG named Stacy. My husband likes to say, “The best thing about Stacy is that she answers the phone!”  But actually we like Stacy for more than just that. While I was down with a bad cold and sore throat, Charley took up my job of  calling and bugging people. :) He reached Stacy and they spoke on the phone for over an hour! Incredible!  She gave us ideas about how to  work the system to get Laelia’s  AFO  fixed, and she seemed to understand how important this all was. Finally someone helpful! Prayer answered. Stacy even gave us our much needed PT authorization!   Then  Charley  immediately called Children’s Hospital who only has one scheduler person who doesn’t work Fridays!! Ugggggggh. So we finally have auth, but still not PT. Hopefully soon.

While Charley was on the phone with Stacy, Laelia was rubbing my foot to comfort me since I was miserably sick. She’s a total sweetheart and just cares so much for people!  Then she started “reading” me stories. At one point she said, “Mama, I’ll read you a God story.” Then she grabbed my Bible off the coffee table and held it in front of her upside-down, opened to the middle, and began,  “Once upon a time there were three little pigs and a big bad wolf.”   :) Best Bible story ever! :)

Laelia is adorable. Even when she’s in pain she’s adorable. On Saturday we went to get our family picture professionally taken for the first time ever. I knew Laelia was in pain so I told her I had a present for her (small thing of bubbles) if she could last the outing with a good attitude.  When she’s in pain the slightest thing can set her off. (I’m the  same way.)  So when she was playing with a picture sample and it got taken away she started to act up. But then immediately  as if by magic she  changed her tone and  apologized to the people nearby.  Right  as they were praising my parenting she added, “Now where’s my present?” :)    

She was also a good girl during her first ever chiropractor appointment on Thursday! We’re trying to see if  working her spine will allow her more range of motion or strong, more stable movements.  The chiropractor loves her because  she follows all his directions perfectly. She laid her head down  on the table and  took deep  breathes as he pressed down on her lower back. I thought she’d  throw a fit since he was a doctor and he was touching her, but I think his blue jeans and  great voice (better than Ted Williams!) put her at ease.  It looked relaxing! Charley and I found ourselves watching this happen while holding hands and grinning.  I didn’t know my wiggle worm would enjoy that so much!   Because she was so great  she got to pick the dinner of her choice. She chose Apple Jacks cereal dipped in ketchup. And that’s the last time she’ll ever get that deal. :)

Also, and this is exciting for me, we have a new rule in our home! The rule states that there will be no more watching TV or movies of any kind unless doing active weight bearing at the same time. (The rule does not apply to adults or Saturday mornings when adults want to sleep in. :)) So far this rule is proving to be a great encouragement during physical therapy. Backyardigans and Blues Clues and KPBS shows  are even more enjoyable when you’re earning them! Plus she doesn’t overdose on TV this way since she can’t watch much while weight bearing. But even simple weight bearing (like sitting on a ball with Mama holding her hips) counts, so she can last a whole show. It’s working really well!

Also we received a gift from our dear friends to pay for private PT out of pocket until  CCS  does the right thing.  The  same friends also  put us in touch with a friend of theirs  who is a PT, and that friend put us in touch with a closer PT who will most likely be doing the therapy soon.  I’ll call her tomorrow. It has meant so much to me. I’m so blown away by people’s  generosity.

Another example of generosity is that  for Jewels for Jared,  our friends and family  bought bracelets  to support baby Jared and had them sent to Laelia in her size! She has thirteen (!!!)  $5 bracelets that  you all gave her! She earns them during PT exercises. Thanks so much! Not only did you guys support Jared’s medical expenses, but you also supported Laelia’s physical therapy too!  Bracelets are great motivation to finish a 30 second push up!

Okay we just put Laelia down for the night and it sounds like she’s sleeping. No screaming. I hope it lasts. We have to do Laelia’s foot stretches every hour during the day  since her AFO is not doing the work for us. The stretches have gotten easier, not because she cries less, but more because we’re getting used to it. I’m relieved that my baby’s cries no longer kill a part of me, but at the same time I’m not thrilled about being callused in that way.

So much is still up in the air right now. Where we’ll be living, how she’ll go to preschool in pain, what to do with my job and how to deal with  her  right foot are just a few of the unknowns right now.  We’re hanging in there though. Life with arthrogryposis is sometimes hard, but this girl has brought so much joy to our lives. I mean it. I wouldn’t mind having another one with the same condition.  Charley hears this and thinks I’ve gone mad. :)

7 Responses to “Blood and Guts”

  1. jessi Spring says:

    Poor Baby! That “crater” is a bad one.

    I,know just what you mean about being worried that you’re getting called to her crying during,therapy. That is heart breaking for me too. If I’m not heart broken about her crying….I am heart broken hat I am not heart broken enough.

    It’s a rough road sometimes. I think you are very brave!

  2. Teresa Caldwell says:

    Bless your hearts…so much you’re dealing with. You’re Such Wonderful Parents!! Lali is a Blessing and a Blessed little Angel!! I hope and Pray that her little foot heals quickly. I love her attitude…in the middle of your Mommie praising….”Where’s my present”? I love this Child; however, I do seriously question her dinner choices?? Apple Jacks dipped in ketchup…I’m going to have to let this go. LOL!!! CCS has been a been difficult for Jilly and Gamo as well. Just now, maybe, in a week going to get the appointment to see Dr. Amenian at CHOC. Love you guys so very much!!

  3. Teresa Caldwell says:

    You’re Such Wonderful Parents!! Lali is a Blessing and a Blessed little Angel!! I hope and Pray that her little foot heals quickly. I love her attitude…in the middle of your Mommie praising….”Where’s my present”? I love this Child; however, I do seriously question her dinner choices?? CCS has been difficult for Jilly and Gamo as well. Just now, maybe, in a week going to get the appointment to see Dr. Amenian at CHOC. Love you guys so very much!!

  4. Kristin says:

    :( sorry to see Laelia’s got a bad sore..that’s never fun.. I hope it can be cleared up quickly..the beginning to get used to the crying is an unfortunate side effect of having to take care of them :(.. don’t worry you’ll probably make it up some how on something else with her..i found i compensate somewhere else in my little guys life when it doesn’t involve his medical things…
    i have to agree with Teresa, seriously questioning her dinner choices lol :).. but if she liked them good on her ;).. but I don’t blame you for not letting her make that choice again :) I hope you can get some help from CCS soon..

  5. Lynn says:

    Keep up the excellent work, Mom, Dad and Lali. I’m sure you get a lot of feedback from people who are encouraged by you, but I bet you don’t even hear from half — being too often part of that other half, I know! Thank you for keeping faith!

    Praying for PT and non-cratering orthotics!

  6. Becky says:

    Love and hugs! I’ll be praying for scheduling breakthroughs today, health all around, and that the AFO issue can be taken care of promptly. Please give Laeli a BIG hug for me.

  7. Tam says:

    tellCharley two is twice as much fun as one! I know this first hand!!! sophie is this bright shiny bubble of sugar. how could I NOT love her? hugs. hang in there Mama. hug that baby doll for me. her pressure sore looks pretty painful! poor thing. I sure hope our AFO experience is better than yours is going! we will find out on Thursday! the ones we got in Minneapolis are at about a 45 degree angle. Yeah. that will help. NOT! why wear anything at all if the AFOs are that far relaxed. thinking of you and Charley and Laelia.

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