Halloween

We had a fun Halloween this year. The girls got dressed up for our ward's trunk-or-treat night on Tuesday. Lexie was a bumblebee, Annie was Snow White, and Molly was a princess.

Then on Halloween, we carved a pumpkin. Well, actually Justin did all the work, but the kids had fun watching. Annie painted a pumpkin at school earlier this week.


Since we went trunk-or-treating earlier in the week and got plenty of candy, we decided to do something different on Halloween. We decided to go to the zoo. There was hardly anyone there so it felt like we had the place to ourselves and could get right up close to the cages. It was the most fun we've ever had at the zoo before. Luckily it was a nice day in the 60's. We think we might make it a tradition every Halloween if the weather will always be this nice.

Molly's a Hair Stylist!

This is how I found Lexie after I noticed how quietly she and Molly had been playing. Molly decided to "style" Lexie's hair and was very proud of how beautiful she made Lexie look.

Lexie's Catching Up!

We had Lexie's 6 month review today with her physical therapist. Lexie has made amazing progress in her development and is doing so well! She is still lagging behind just a bit in her gross motor development and language skills, but at this point is still considered to be in the "normal" range. She has made such great strides that she is actually being discharged from her Early Intervention program! We are so proud of Lexie and all the work she's done to get caught up on her development!

Jodi's MRI and Sonogram Results

Three pregnancies have not been kind to my body, especially my first with 24 hours of labor and over 3 hours of pushing. I've had severe varicose veins in my right leg and pelvis for over 5 years now and have resolved to never have any more children unless I get this pain fixed. So I started the process a couple weeks ago.

I first had a sonogram that showed that the blood flow in these veins in my leg is actually going the opposite direction than it should. Perforating veins connect deep veins to superficial veins. Blood is supposed to return to the heart from these superficial veins, through perforating veins, into deep veins. I have a perforating vein that has incompetent valves actually allowing blood to flow from the deep veins into the superficial veins--thus the source of a lot of my pain. That superficial vein also has several bad valves along the entire length of my leg. To fix this, I'm having surgery in December. First they will use microwave energy to seal off the perforating vein. Then they will do a phlebectomy to remove the superficial vein. They'll make several small incisions the whole length of my leg, and remove the vein in small pieces.

But before those procedures can be done, they have to treat the more underlying cause in my pelvis. I had an MRI last Monday to allow the doctors to watch the blood flow and see my vein sizes in the pelvis. Of my two ovarian veins, one is "huge" (as the doctor said), and the other is also rather enlarged. In a couple weeks I will be having surgery to fix this. A radiologist will do an embolization procedure where he'll insert a catheter into the vein up into the problem area and insert a blocking agent into the vein that will prevent blood flow into the bad veins, essentially shutting them down. Blood will then be re-routed through other neighboring veins.

I have high hopes that these procedures will be successful in eliminating my pain. Who knows, maybe we'll even consider having more children.

72 Hours After Surgery

We are all shocked at how well Annie is doing since her surgery on Friday. She is still needing some suctioning around the clock and is on 1.5 L of O2 at night. We're still giving her Lortab, but not quite as frequently as before. She's even making some noises--must not hurt her too bad to use her voice! She's enjoying being up in her wheelchair and playing with toys on her tray. She's still getting really tired and is sleeping a lot, but overall, doing great. We feel so, so blessed and are so grateful for everyone's prayers for her.

Update on Annie's Recovery

Annie did well last night in the ICU. We'll actually be going home today. They took out her nasal breathing tube this morning and her sats are 95-98 without oxygen. She still requires a lot of suctioning, so it's good we already have a suction machine and oxygen concentrator at home. She'll probably be on Lortab around the clock for a week. She's only had one episode of apnea since surgery with sats at 72. We'll update more later.

Annie's Out of Surgery

Annie just got out of surgery and now she's in the ICU. She had her tonsils and adenoids removed as well as a suspicious mole removed. We've been very concerned about her ability to breathe on her own since she has such low muscle tone, but things have gone fairly well so far. She still has a small nasal breathing tube, but we hope to be able to take that out soon. Otherwise, Annie tolerated surgery fairly well--the next couple days will be tough for her though. We appreciate everyone's prayers for her.

Getting more answers...

We have had a record amount of doctor appointments for Annie in the last month, and I want to express my deep appreciation to everyone who has been so helpful in watching Molly and Lexie while I take Annie to all her appointments. I'm also so grateful to everyone for keeping her in your thoughts and prayers and for asking about how she's doing. We feel so loved when people express a genuine concern for her. We have been so blessed to have such wonderful friends who are so generous in helping us during such a busy and stressful time. I have so many dear friends who so willingly (and repeatedly) welcome Molly and Lexie into their homes. We are also so grateful for family that continually ask about her and listen to us endlessly talk about her and her appointments and help us think through all the decisions we have to make. We appreciate our family for being such a wonderful support. Thank you, thank you!

We continue to feel like we're making progress towards Annie's treatments. I took Annie today to see the sports medicine doctor that will be performing her knee surgery. He said she would definitely benefit from surgery to keep her kneecap from dislocating. The surgery will involve two parts: first, he will release the tight tendon on the outside of her knee that has been pulling the kneecap out; second, he will use a donor tissue graft to connect her kneecap to her femur on the inside of her knee to act as a tether to hold on to her kneecap to keep it from sliding out. Typically the tissue used for the graft comes from the patient's hamstring, however, since Annie's hamstrings are so small and atrophied and have unpredictable tone, a donor graft is required.

Fortunately, recovery shouldn't be too bad. Annie will stay in the hospital one night and wear the same type of knee brace after surgery that she is currently wearing. She'll also have a cast on her foot since the orthopedist will be releasing Annie's ankle tendon at the same time. Supposedly she'll be on pain meds for a week, and have her ankle cast for 6 weeks, then a brand new pair of AFOs. Unfortunately, the ENT suggests Annie have a full 6 weeks of recovery from her tonsilloadenoidectomy before her throat will be healed well enough to have her intubated again for her knee and ankle surgery. So she'll need to endure her dislocating knee longer than we expected, but at least this way we'll know that Annie will be at her healthiest and strongest going into her second surgery. (The tonsilloadenoidectomy must be performed before her knee and ankle surgery due to the risk of operating on her with an obstructed airway.)

The tonsilloadenoidectomy will be the more difficult surgery for Annie and we appreciate your prayers for her as she goes into this procedure. The outcome is unpredictable due to Annie's irregular muscle tone. The ENT said in some rare cases in children with low tone like Annie, the tonsils actually act as a stent to hold open the airway and removing the tonsils in those cases has actually caused the airway to collapse even more. If Annie's airway after surgery continues to be obstructed, they will intubate her. If she fails continual extubations they will start pushing us to do a trach.

The other risk is that if an emergency situation arises in surgery, standard procedure is to do a trach. We realize that trachs are reversible, but we acknowledge that in a child like Annie, once given a trach, she will probably never come off of it. A trach has always been something that we've said we would not put Annie through, and although we try to just take each situation as they come, we feel that a trach for Annie would be a major change to her quality of life (hers and ours). It would put her at a whole new level of daily care needs and would limit certain activities that she could participate in. It would also require even more medical equipment to have with Annie at all times, and require more trained supervision of her at all times.

So even though the doctor anticipates no need for a trach, we are still somewhat nervous because Annie's tone is so unpredictable. So please keep Annie in your prayers and pray that she's able to have a smooth surgery and respond well to the procedure. She is now scheduled for her tonsilloadenoidectomy (and a mole removal) on October 16th. Her knee and ankle surgery is not scheduled yet, but will most likely be the first week of December.

Another Visit with Annie's Orthopedist

We met with Annie's orthopedist again today since Annie's kneecap seems to be too high on her leg ever since she quit wearing the immobilizing straight leg brace. They did x-rays to check it out and said that her kneecap actually is in a pretty good location and not considered dislocated towards her thigh. However, the groove that her kneecap normally sits in is very shallow and her kneecap is still dislocating to the side of her knee every time she bends her knee.

It is very painful for her and even after the brace specialist evaluated her knee brace, they still could not get the brace to work in preventing the dislocations. But because of all that, the orthopedist is now agreeing that Annie needs to have surgery on her knee. They will release the tight tendon that is pulling her kneecap out of place and also tighten the opposite tendon to help pull the opposite direction on her kneecap. So we will meet with the sports medicine doctor who will perform that surgery, and then try to coordinate it with her heel cord lengthening and tonsilectomy/adenoidectomy. Oh, and a mole removal as well! Annie should be a brand new kid after all of this! We're praying for good results and a quick recovery. In the meantime, we're trying to keep her as healthy and strong as possible to help her endure all of these procedures well.

Annie's ENT Appointment

We met with the ENT for the first time today. He said Annie's soft tissue neck x-ray showed mild enlargement of her adenoids. He wasn't able to get the sleep study report before our appointment, but after telling him some of the statistics from it, he agreed that Annie would most likely benefit from a tonsilectomy/adenoidectomy, but doesn't want to schedule anything yet, until he sees the sleep study himself. Fortunately, he's willing to combine his surgery with her ankle surgery, so that will be nice.

His concern is that Annie's space between the back of her tongue and the back of her throat is much smaller than a typical child's. So he's not certain that the tonsilectomy/adenoidectomy will resolve her sleep apnea, but said it might open things up a little more for her. Also because of Annie's low muscle tone in her throat, he says surgery might not completely resolve the apnea. In that case he said a trach might be an option, but we've always decided against giving Annie a trach. Her level of care and quality of life would dramatically change, and not just for her, but for the whole family. Our goal has always been to keep Annie happy and comfortable and able to enjoy her life to the fullest, and we feel a trach would limit her abilities to meet that goal.

On the other hand, the doctor said that if we don't treat her sleep apnea, Annie would eventually experience heart failure, working so hard to get oxygen to her body. So for now, we're really praying that the tonsilectomy/adenoidectomy will help at least reduce the number of sleep apnea episodes she has each night. We also might consider putting her on C-PAP, but that has its own set of challenges as well with all the vomiting she does at night, as well as her need to suck on a binky. We are also having a hard enough time just keeping an oxygen cannula on her at night and don't think she'd do any better with a C-PAP mask. I guess we'll cross that bridge when we get there, once we see how successful the tonsilectomy/adenoidectomy is.


After Annie's ENT appointment we went to pick up Annie's new knee brace, but because her leg muscles are so atrophied and her joints are the largest parts of her legs, they couldn't even get the new brace on her. But after they saw that Annie's kneecap is out of place again--this time to the top--they found a completely different brace that will help hold the kneecap down in place. The problem is that we can't get her kneecap back into place. So she's wearing the new brace to prevent her kneecap from moving around, although her kneecap is still up towards her thigh. We're going back to the orthopedist next week to address this issue again. We're really just hoping and praying that they doctor will operate on her knee when she has her ankle surgery and tonsilectomy/adenoidectomy, and then we can stop worrying about her kneecap dislocating and the pain it's giving her.