Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged shunt

MRI

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Just an  update because a couple people have mentioned they are waiting to hear how the MRI went today…Philip took Leeza down to the U this morning and there’s almost no change from 2 weeks ago. She still has a large amount of water around her brain so the shunt was adjusted to its’ highest level and we’ll go back next Wednesday for more MRIs. Since we thought Leeza was having a shunt malfunction this past weekend Philip was able to tell the neuro staff what we’d seen and they assured us it was not a malfunction and told us how we could differentiate it from a regular illness next time. Considering that is wasn’t a malfunction we learned that Leeza is a really whiny sick person (hopefully that’s a stage!).

We also got a demo wheelchair this week and I can’t tell you how wonderful it is to see the possible end of taking a double stroller everywhere we go! Leeza still has to build up a lot of strength to be able to use it efficiently, but she likes it and is already able to get from it to her car seat alone. Yea! And it allowed us to get out in the yard yesterday afternoon without her having to scoot everywhere. I’m loving this chair so far!

Changes

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I’ve been slow getting updates here, but we’ve been pretty busy. Leeza has continued her weekly PT sessions, along with some speech and occupational therapy,  and we’re still working on getting a wheelchair ordered. She uses a walker, her ankle/foot braces and a velcro contraption called a Theratog to help her walk when she’s at church or other open places, but most of the time she scoots to move. She got to try some crutches a couple weeks ago and she doesn’t have the core body strength to use those at this time. We hope in the future they would be an option for her. We have had a few people ask if she’s expected to ever walk independently and the answer to that is no. Both of her hips are dislocated (and there’s no way to fix that) and she’s never expected to gain control of anything below her knees. It doesn’t mean she won’t be independently mobile, just that she’ll need some sort of equipment to support her.

We’ve also been spending a bit of time at the University checking out her brain. Her shunt had been adjusted to a lower level last time I wrote, but when we went back in a couple weeks ago the new MRI showed that almost 1/3 of her head was water. The shunt was allowing the ventricles in her brain to decrease, but her brain wasn’t growing fast enough to fill in the space so her body was filling it with fluid. Not good. The shunt was put back to a higher pressure and we go back in this coming Wednesday for more MRIs to see if it looks any better. We knew that Leeza was acting more confused than usual and was just totally lost when we deviated from our normal schedule. In the past couple of weeks we’ve noticed several other changes in her, but it’s difficult to know whether they’re because of all the changes going on in her brain or because she’s growing and her spine is still tethered. The symptoms of both are very similar and very frustrating at this point because we’re watching her decline and there’s nothing we can do to stop it until her brain is stable. The spinal surgery will release the nerves that have attached to the bony part of her spine and will stop any further damage, but until that surgery can be done damage is continuing to happen and she is  losing function that may or may not be regained. At this point we just ask for prayers that her brain would stabilize so we can keep our surgery appointment in May and for patience and understanding for all of us as we learn to live with this uncertainty.

On a happier note, we got to go visit my family in Texas last week for the first time since Leeza has been home. She finally got to meet her Memama, had her first chips ‘n salsa, met her first horse (she was terrified!), met 2 more of her cousins and was in her first race. Philip and the kids, my mom, one brother and his girlfriend all participated in a race while we were there and we had a great time. Despite our fears that she wouldn’t do well on a long car ride, she did great! We spent almost 16 hours in the car on the way home and with the exception of 1 food fight in the back seat, it was pretty uneventful. Thank goodness for DVDs!

A Bad Hair Month

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Just when I figured the poor kids’ hair couldn’t possibly get any worse we realize she has surgical glue ALL OVER her incision. She hasn’t been aloud to bathe for almost 3 weeks,  a fourth of her hair is shaved and she has a mom who is still trying to figure out what to do with those beautiful curls. Her ‘do is a bit funky right now. On the up side, she doesn’t really care, she has cute hats thanks to Nanny and Mrs. Marcia and the sutures are off! We just got back from the U to have them removed and she gets to take a bath tomorrow. It took 3 of us to hold her down and the promise of a cookie for lunch to get those sutures out, but it’s done and she’s having fun showing off her scars to Josiah.

She also had some MRIs done today and I got to see how much the ventricles in her brain are starting to shrink because of the shunt. There has been some big change, especially towards the center of her brain. Because it’s changed so quickly there is a thin layer of fluid around her brain so they decided not to change the pressure on the shunt today to give her brain a chance to regulate itself. We’ll go back in a month to check it again and possibly change the pressure. By that time we should be getting close to the pressure they want to plan the spinal surgery. All in all the appointments went well today. And once again, our church family bailed us out of a tight spot by watching some of the other kids who were sick while I took Leeza in. Thank you! Next week we see Urology and Orthopaedics again.

‘I Like-a Straw’

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Leeza doesn’t really understand what just happened this week…we explained that the doctor put a straw from her head to her tummy because she likes straws. She actually seemed to like the hospital. Everyone waited on her and she had one-on-one attention from us. She got to eat chicken strips and chocolate milk (when she had an appetite) and stayed up late each night. Life was pretty good, and then we came home and chores and broccoli became a regular part of her day again. It’s going to take some time for her to get used to this! Her shunt seems to be doing just fine and we’ll go back in 2 weeks to have it adjusted to the next lowest pressure and have her sutures taken out. We’ve got reminders of what a shunt malfunction looks like in my wallet and on the fridge and, Lord willing, we won’t have much practice in what that looks like.

The other kids were shuffled between church friends for the beginning of the week as Philip and I took care of Leeza and then Nanny and Ms. Sandy came to hold down the fort the rest of the week. Once again, this week wouldn’t have worked without all the help from friends and family.

All in all I think it went pretty well. Leeza is recovering well, the kids loved having family here and Philip and I learned how the hospital system works so we’ll be better prepared next time. We know now which units have showers, that parents aren’t fed, how to get parking paid for, that the uncomfortable-looking cots aren’t so bad and that we will take charge of Leeza’s meds next time. We also met a wonderful social worker who is helping me wade through the DHS paperwork (yeah!) and got to see my buddy in urology who has helped us through so many difficult days. The next surgery will be in 3-6 months and I feel like we’ll be going into is a bit more prepared than we were this time around.

Just Fine

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Just a quick note that we’re doing fine. Leeza was back to normal today and enjoyed playing with some new toys and snuggling with us all day. One hand splint got to come off if she promised to leave her IV alone (so far so good). She ate her breakfast, most of Philip’s and half of mine…safe to say her appetite is coming back! She was moved out of PICU tonight to the regular ped’s floor and we’re hoping she’ll be able to scoot around soon because we hear there are plenty of toys and crafts to keep her busy if we can get out of the room. We’re expecting a Thursday or Friday discharge, but we’ll have to wait and see what the Dr. M says. Philip and I will be swapping places tomorrow afternoon and I’ll stay full time at the hospital with her so if we don’t get posts up in the next few days it just means she’s keeping me busy! Thanks for the prayers!

Shaved

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This is going to be short because I’m tired, but just wanted to let everyone know Leeza made it through surgery just fine. Her shunt looks good so far and the doctor said he didn’t find any surprises today (always good when you’re talking about a brain!). She is in ICU for a day to make sure she’s responding alright and is not so happy that her hands are all taped up to prevent her from ripping out her IV and monitors. She’s also not going to be happy when she sees what they did to her hair. Dr. Menezes heard that she was concerned about them shaving her head so he tried to be conservative and left some curls around the front of her face…everyone else will be able to see the big bald spot, but she probably won’t! She did great through the whole thing and is resting pretty well right now. All in all, it’s been a good day full of lots of blessings from God. My favorite part was watching her heart rate in the recovery room as Philip told her he loved her. Each time he said it her rate would increase. We all know it’s important to tell our kids we love them, but to see her responding to it on the monitor was cool.

We Made It!

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After a last minute scare about another infection we found out last night that Leeza is fine to have her shunt surgery on Monday! I’ve been keeping the kids isolated except for church and occasionally the library and Leeza’s been on 2 preventative antibiotics to get to this point so we’re pretty excited to have made it this far. She will have a shunt placed from her brain to her abdominal cavity to relieve the pressure of all that extra fluid in her brain. She’ll be staying at University Hospital for 3-5 days after the surgery and we’ll be juggling kids between the 2 of us, some family and several church members. Thank God for family (bio AND church!)!

Other than that we’re staying busy with normal preschool stuff…Kas is cutting all 4 molars and learning to walk this week, Grace has an on-again-off-again relationship with potty training, Leeza suddenly loves books and Josiah is continuing to learn to read and mastered zippers this week. Philip has been Super Dad (as usual) and my claim to fame this week is that I got a carrot, 3 peas and 4 edamame in Leeza. And we all survived horrendously cold temperatures without any frostbite or falls on the ice. Not too shabby!

Here We Go

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We had Leeza’s MRI session today and found our her hydrocephalus that ‘didn’t require surgery’ (according to doc’s from her country) DOES require surgery and fairly quickly. The fluid in her brain has caused the cavities in her brain to become incredibly large, which in turn has misshapen her skull (which we knew) and not left much room for her brain to grow. Had this been corrected early on the needed shunt would not have been too big of a deal, but because it’s gone on this long she will require a special shunt that can be adjusted as the pressure in her brain changes. A regular shunt would allow the pressure to change quickly which would cause brain damage. So, we go with the programmable shunt and a week-long hospital stay later this month. All this has to be done before we can schedule the back surgery, which will be sometime early next year.

All of this includes risks, but oddly enough I don’t think either of us is really conerned about it right now (and Leeza has no idea what we’re saying so she’s fine with it all!). Without the surgeries she faces certain brain damage and a shortened life. And it’s all totally out of our control. But God knew she would need this. He put us within 45 minutes of the only pediatric neurosurgeon in the state and one of the best in the country. He covered 100% of her adoption expenses (through His church) so that we aren’t totally scared of the medical bills we know are coming. He scheuduled this first surgery during the time that Philip’s whole company gives them a week off each year and when family might be more able to come help. And he brought her home in time for so much damage to be prevented. In fact, with this shunt we have a very good likelihood of seeing substantial improvements in cognitive abilities. While it’s certainly not what we had planned for our Christmas break, it is what God had planned. So, here we go!

Quick timeline of what’s coming soon:

1. Orthopedic evaluation next Friday

2. Court date to readopt Leeza in the US, Dec. 23rd

3. Shunt surgery,  Dec. 27th

4. Back surgery 3-6 months after shunt