God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)

Tuesday, April 1, 2014

A new twist...

Back in February, Faith had an appointment with an orthopedist. She's been walking on her toes for awhile, and when she had her 5-year old check-up her doctor noticed that it was mostly just in her left foot. He said that was different, actually that he had never seen a kid who only toe-walked on one side before, so he referred her to the orthopedist.
So, I took her for the appointment, fully expecting that he would recommend physical therapy or something to stretch things out. The orthopedist checked her out, tested her reflexes, and had her walk for him. He said that the plan to fix it would be a series if casts, each stretching a little more than the last, a special splint to wear at night, and if those didn't work, a surgery to lengthen things so that her foot can flatten. And then, he shocked me.
He said that she walks on her toes because she has cerebral palsy.  He said that the left side of her body is hyper-reflexive, and that she had something called clonus when he tried to stretch her foot. He referred us to a neurologist at Children's to confirm the diagnosis.
We honestly NEVER expected to hear that Faith could have cerebral palsy.  She seems totally normal, with only a few slight exceptions. Her balance has never been good. She is fairly timid because of her balance, not really one for adventure. When she took a gymnastics class back in the fall,  I noticed that she was far less coordinated than the other kids, most of whom were younger than she was. We've always blamed her bad balance on her surgeries, but have noticed recently that other kids with similar histories don't have the same problem. Her fine motor skills are not that good; she has had a really hard time learning to write. And then there's the toe-walking thing...
But she is incredibly smart. She's been reading since last fall, she does math without even thinking about it/realizing she's doing it. She will be going to Kindergarten next year, based solely on her birthday, although if she was tested and put into a class based on how she did, I am sure she would be in first grade. I have purposely stopped teaching her things, because otherwise there will literally be nothing left for her to learn in school!
So, we saw the orthotics guy shortly after her appointment, and he got her fitted for a splint. God was working behind the scenes, and it "just so happened" that there was a splint in her size on the counter in the room, and it was purple with butterflies on it! She has been wearing it every night for about a month now.
As usual when it comes to seeing a specialist at Children's, we have had to wait six weeks for her appointment with the neurologist. It is finally coming up, next Tuesday. After that appointment, the casting would start at the orthopedist. I've been doing my research, as usual, and we've been talking about what I've learned, and we actually aren't settled on the casting idea, or the surgery. The Orthotist suggested that a brace for everyday wear could actually be an option, and brought up the possibility that if she does have CP, then her natural tendency is for those muscles to be tight, and even if they surgically lengthen them, they could re-contract and the problem could come back. Needless to say, I have a lot of questions for the neurologist.
Faith and I went to a healing prayer/night of worship service at church Sunday night. She stood in front of the whole church and prayed into a microphone, "Dear God, please help my leg feel better, amen!" Then she prayed for a lady with cancer, and then she got prayed for. We are boldly approaching the Throne, asking God for another miracle for Faith- that  He would stretch her muscles and relieve the tightness, that her reflexes would all be normal, and that the neurologist would tell us on Tuesday that there is NOTHING wrong with her. Monday morning after she was prayed for, she complained that her leg was hurting... Then I tried stretching her foot, and it went further than it ever has! After that I had her walk, and she was walking with her feet flat, not in her toes! She got SUPER excited and yelled, "God is healing my leg!" So, we will see. She is claiming her healing in Jesus' name, and she definitely has that perfect child's faith, believing without doubt that God is going to heal her without casts or surgery.
I hope to be able to update after her appointment with the news that she does NOT have cerebral palsy, but even if she does, we still see it as a miracle that she has such a mild case that no one had any idea until she was almost 5 1/2!

Wednesday, November 13, 2013

5 years later...

 5 years ago today, our lives changed in ways we could never have imagined. Our little girl was born with a big ball of purple intestine hanging out of her. We were expecting it, but could never have prepared ourselves for what she actually looked like. (We looked at pictures before she was born, but never saw one where the intestines were as swollen, dark, and matted as hers were.) She had a complication at birth when her umbilical cord ruptured and they had a hard time stopping the bleeding, so I was only able to see her and kiss her head before they whisked her off to the NICU.
6 hours later, she was in the operating room for her first surgery, where they put her intestines into a silo and put in her central line, through which they "fed" her the IV nutrition that kept her alive, but ultimately caused her liver failure. When I finally got to see and actually touch her the next morning, this is what she looked like, with tubes and wires everywhere.
Six days after she was born, she went to the operating room again, and they were able to close up her belly. She did well after surgery, and we were able to hold her for the first time when she was 8 days old.
The days that followed were marked by many unknowns. She had a mystery condition, that caused her to swell uncontrollably. No one knew what was going on. Thankfully, we had no idea at the time just how serious her condition was. This was the first point at which she very well could have died.
The day she turned 2 weeks old was Thanksgiving, and God answered our prayers by giving the doctors the answer to what was causing Faith's swelling. They put in chest tubes, and the excess fluid was able to drain.
She stayed in the NICU for another 4 months, facing several more surgeries and many challenges, especially with eating. Meanwhile, the life-saving IV nutrition was causing more and more damage to her liver, and she was severely jaundiced. At this point, without treatment, she had only a 22% chance to survive. Her doctors in Denver diagnosed her with intestinal failure, and told us that she would need a small bowel transplant- a risky surgery with only a 50% survival rate post-transplant.
Somehow, God led me to Google just the right combination of words one day, and I discovered that we had another option- going to Boston Children's Hospital and getting her into their Omegaven study. After a whirlwind of figuring out specifics, getting tickets for our flight, and more, Faith and I found ourselves in Boston. After only a week on Omegaven, Faith's feet started turning pink!
After a month in Boston, Faith's liver was completely normal, and we were given permission to bring her home!
Looking back at everything we went through, it still amazes me sometimes that we have been so amazingly blessed! Just thinking about where we started with Faith, the times we could have lost her, and looking at her now, makes me tear up. We thank God every day that He let us keep her, that he was faithful and brought us through everything. He used those experiences to strengthen our faith, to increase our trust and dependence on Him, and to show us that He really does work all things for our good!

Friday, June 14, 2013


Well, the answer to Faith's mystery post-op illness is simple- she has a UTI. Seriously. The surgery she had on Monday was to help keep her from having them, but apparently it gave her one as a parting gift. 
It explains the throwing up, the kidney/back pain, the decreased appetite, the decreased urine output... Basically everything that's been going on since Wednesday night. The thing that bothers me is that I spoke to the urologist's office multiple times, and never once did they mention that it could be a UTI! 
Thankfully, it is easy to treat, and after the IV fluids and her first dose of antibiotics, Faith is feeling much better. This is the first she's wanted to play since Wednesday, which is great to see and makes Selah happy too! 


In the ER at one of the Children's satellite locations near Dave's parents' house... We rarely go to the one at the main hospital because the wait is always so long, and at the satellites we are triaged and in a room usually within 10-15 mins. I dropped Noah and Selah off with Dave's parents on the way here, so that's another benefit.
Faith has continued throwing up, and yesterday didn't eat anything and slept almost the entire day. Yesterday we had to give her an enema (fun, fun), which did have results, but didn't stop the vomiting. This morning when she threw up, it had streaks of blood in it.
I called the urologist's office and the GI doctor's office this morning. The urologist's office ordered Zofran and wanted us to push her to drink lots of fluids at home; the GI's office said with her history we should go to the ER. Since it's Friday, and since the urologist's office hasn't seemed to have a good understanding of Faith's gut history, I was far more inclined to agree with the GI's office.
They have already done gut X-rays, and finally (5 sticks later) got an IV started for fluids. They tested her pee (what little bit there was) and it came back positive for bacteria, so they need to do a culture, but we'll probably have to wait until the fluids go in so she can actually pee. She didn't even have tears to come out when she cried the last two times they poked her for the IV! 

The X-rays looked ok to me, just lots of air in her guts, but I'm waiting to hear what the doctor says. He said he could feel stool in there when he palpated her belly, which someone who's had Miralax and an enema (and hasn't eaten!) in the last 24 hours probably shouldn't have...
SO... Current prayer requests would be for her to feel better when she gets hydrated, with no more vomiting; for her (kidney?) pain to go away; for her to pee enough for the culture test; and for the infection to go away.

Wednesday, June 12, 2013

No place like HOME

Today started out awesome for Faith, she got up this morning and was acting almost normal! Other than moving slower than usual, she was her normal, happy, playful self. Unfortunately, in our excitement over how well she was doing, it didn't occur to us that she was totally overdoing it. 
Tonight we paid the price for our oversight... The kids and I got home around 7 pm, after stopping briefly at my parents' house (Dave had to work tonight, so he left his parents' house earlier this afternoon). 
While at my parents', Faith threw up. Then when we got home (less than a 5-minute drive), she threw up in the driveway. Since then, she's thrown up probably another 5 times...
Between all of the throwing up, and trying to get Noah and Selah fed and put to bed, Faith didn't get her pain meds on time. Thankfully, I got her to take some anti-nausea medicine and eat a few Cheerios and the throwing up stopped long enough to get her medicine down. 
I am really impressed with how well the meds are working, especially now that I've seen how uncomfortable she is when they wear off! She was in quite a bit of pain, not wanting to move because of her incision, and complaining of back pain from the epidural. It didn't take long after she had her meds for her to relax and fall asleep, thank goodness!
I set up a temporary bed in our room for Faith, until she is feeling better and is less likely to need us in the night. Normally, Faith and Selah share a room, so this way Selah will be able to sleep through without being woken up by Faith.
I was pretty worried with the throwing up that she might need to go get checked out, but since she stopped I think she is alright. I actually am wondering if the throwing up was caused between the ride home, the heat (it was 90+ degrees here today), the smoke from the wildfires, and the pain from her meds wearing off...
Tomorrow she is allowed to take a bath and soak the dressing off of her incision. I am curious to see what it looks like under the gauze. In 4 weeks, she'll have a follow-up appointment with a kidney ultrasound to check things out and make sure she doesn't have any kidney scarring.
Please pray that her recovery continues to go smoothly, with no more nausea/throwing up, and that there is no scarring on her kidney ultrasound when she has that.

Tuesday, June 11, 2013

And away we go!

Faith is walking...
...her guts are working...
...she is playing...
...and I am signing discharge papers! Happy Birthday to me! :)

Baby steps...

So, we got her to sit up and she didn't cry! But then we made her stand, and that didn't go over well. One major meltdown, a new pull-up, and a suppository later, she is settled back in bed watching VeggieTales Jonah. Here's hoping that the next time we try standing goes a little better!

A little closer...

Faith is doing better than she was earlier, she even ate some of her lunch. Her pain is being controlled much better, unless she moves... The anesthesiologist came in late this morning and took the epidural catheter out of her back, so the only thing left in her is her IV. 
Since the extra tubes came out, we got her cleaned up and changed her into one of her own nightgowns I made for her. Then awhile ago, she had a few visitors who brought her a new kitty (thank you Aunt Steph & crew!). 
Earlier this morning, Noah had an appointment at one of the doctors' offices here, so on the way back to her room he and I stopped in the gift shop on the adult side of the hospital and miraculously found her the only unicorn in the whole place. (Since her last surgery in Boston 2 1/2 years ago when they took her feeding tube out, she has gotten a new unicorn each time she's had any kind of unpleasant procedure.)
The nurse practitioner came in a little bit ago to check her out and see if she could go home today. She said Faith looks great, but she would really like her to get up and moving a little bit before she'd feel good about releasing her. She helped me get Faith to standing, but Faith wasn't enjoying it and decided that if she has to stand to go home, she'd rather just stay here...
One concern that I have had since last night is that they don't seem to be taking Faith's history into account when it comes to things like her eating... The nurses have said her bowel sounds aren't that great, yet she is on a totally normal diet. The anesthesia makes the gut groggy and less active, and then the meds she's on are constipating too, so for her to be putting food in when there's no indication that anything is trying to come out makes me nervous... The nurse practitioner ordered a suppository, so hopefully that will get things moving.
We did get her to sit up and play Candyland with Daddy, and she isn't crying in pain, so maybe we'll be able to get her standing soon... (I think she has her own rules... like if you get a card with 2 green squares, you just pick whatever 2 you want as long as they are close to the finish!)

Current prayer requests would be for her pain to subside, for her to be able to get up and take some steps, and for her gut to start moving. It would be wonderful to be released today...

(Not so) Good Morning

Overnight went well; Faith got some good sleep. Her epidural was turned off around 6:00 this morning, and the doctor was in around 6:45 to take out the catheter and the two stents.
She was doing really well at first, and asked for breakfast even (she requested bacon and eggs). For about the past hour though, Faith is in quite a bit of pain from bladder spasms.
The nurse gave her some pain medicine and some other medicine to help with the spasms a little while ago; just waiting for those to kick in. In the meantime, she has a whole tray of food she refuses to eat, a cup of juice she won't drink, and is miserable and begging to go home...
In order to go home, she has to drink 2oz/hr and pee good amounts, and her pain needs to be controlled by the meds she was given this last time.
Please pray for the bladder spasms to stop and for her pain to be relieved!

Monday, June 10, 2013

Last update for tonight

We are in Faith's room, and she is eating. She did need some Zofran; she started out with a couple of Popsicles but they didn't stay down very long. 
Since food service ends at 7:00, we sort of preemptively ordered her food, so she's got a nice tray of Mac & Cheese and chicken tenders that she doesn't feel like eating yet, and she's munching on cheese & crackers and sipping a chocolate milkshake, complete with whipped cream and sprinkles.

Dave's parents took Noah and Selah home, and Dave will be leaving here in a little bit. It has been a long day!
Prayer Requests: 
Faith's epidural pump keeps alarming (and then stopping before the nurse comes in), for no apparent reason. Please pray that either they figure out what is causing it, or that it just stops!
Please pray for Faith's pain to be minimal.
Please pray that she won't have anymore nausea and will be able to eat and drink as much as she wants/needs to. If she does a really good job drinking, there's a chance she could get released tomorrow... which would be a pretty great birthday present for me! ;)
Faith has an epidural, but I guess needed some extra pain meds when she first woke up, so they gave her some Fentanyl and Morphine. Unfortunately, they didn't bring us back until after that, right about the time the meds were kicking in, so we didn't get to see her really awake.
We are still in post-op, waiting for them to take us to her room. Noah and Selah both are anxious to see her, hopefully she will wake up at some point so they can see her awake before they and Dave head back to his parents' house for the night.
Prayer requests: a peaceful awakening, pain that is easily managed with the epidural, and no painful bladder/ureter spasms.

Out of surgery

Both doctors have been out to tell us things went well. The anesthesiologist said she wasn't awake yet. She has an epidural for pain overnight, because she has a catheter and two stents (one in each ureter) that will be in place until tomorrow. The urologist expects her to be released on Wednesday, but said she can eat whenever she wants to, which will make her happy :)
I will try to post again when they take us back to see her, otherwise I definitely will when we get into her room.

In the OR

I went back with Faith about 20 minutes ago. She got to sniff a skittles-scented mask, and then fell asleep with only a few tears and a couple of good hugs. The surgery should last about 2 hours. 
We can feel your prayers, thank you! Current prayer requests are for everything to go completely as expected, for waking up to be easy with no issues, and especially prayers against bladder/ureter spasms in recovery.


Hanging out watching Scooby Doo in pre-op. So far she's only complained about being hungry once! :)
Haven't seen any docs yet...

Breakfast of Champions?

Faith is allowed clear fluids until 10:30 AM, so breakfast today is chicken broth, jello, and apple juice. Except Faith apparently isn't a fan of jello, so it's just chicken broth and apple juice. I'm guessing she will be a hungry girl tonight, since the surgery is supposed to last about 2 hours, and I'm sure it'll be awhile before they let her have anything after...
Prayers for no low blood sugar, no rumbling tummy, etc are greatly appreciated!

Sunday, June 9, 2013

Late night party :)

Since Faith isn't allowed to eat anything real after midnight tonight, and isn't having surgery until 2:30 PM, she, Dave, and I are having a little "slumber party" of sorts... It is 10:06 PM and she is eating pizza and ice cream, getting ready to watch a movie (and hopefully have another snack or two!).
The anesthesiologist called me earlier tonight to see if I had any questions, and told me that because of some new HIPAA thing, they don't release the medical charts to him until the day of! Imagine his surprise then at learning that this will be Faith's 11th time going under general anesthesia... That policy doesn't make much sense to me, especially for a kid with a pretty complicated history... You'd think they would want the doctors to be as familiar as possible with their patients' histories. Thankfully, the only issues that should be of concern to him are her lack of good peripheral IV access, and the fact that most adhesives basically burn her skin off.
We have to be at the hospital for pre-op at noon, so it is going to be a long day... Hopefully we manage to get some good sleep tonight. Thank you to everyone who is keeping Faith (and us) in their prayers, we can feel them!

Saturday, June 8, 2013

Thursday, May 23, 2013


Well, Faith had all of her tests and the results are in. First, the good news: her upper GI/small bowel follow-through didn't show any anatomical issues, no bowel dilation or anything else! Also, the test went faster than it ever has before- we started at about 8:45 and were finished by 1:30! And "finished" had a totally new meaning this time too, because we actually were able to see the barium in her colon, a point that I don't think we have EVER gotten to before. Faith didn't have any issues clearing the barium out, either, which had been a worry of mine since in the past she has gotten almost completely stopped up after one of these tests.

Faith's stomach full of barium, with no reflux into her esophagus!

Lots of barium making its way through her twisty guts

A perfect patient, with white lips from her tasty barium "milkshake"

Now, the bad news: Faith's VUR is not resolved, and has not improved at all over the past year, in fact they were able to see better on one side so technically the grade was increased on that side after this test. She has grade 2 reflux on one side and grade 3 on the other. We had talked to her before the test and let her know that surgery was a possibility, so she wasn't too upset, although I'm not positive she understands what exactly it entails... We've talked more about it since we found out it was going to happen, and are doing our best to prepare her. This will be the first surgery that she will be old enough to really understand what is going on, so we really want to help her know what to expect. The past few times she's had any procedures, we've gone out of our way to clearly explain what was going to happen and what she needed to do, and the medical staff has said each time that they wished all of their patients were like her, so I think that approach is working well. I think it's also given her more ownership of her body, her history, and her health, which seems to be coming at the perfect time, since other kids her age have had reasons recently to ask about her scars and why she is going to have surgery.
Her surgery will be on June 10, and will be at the "other" hospital for children in Denver. As silly as it sounds, I think I am more nervous about her having surgery at a different hospital with a doctor who hardly knows her than I am about her actually having surgery! This will be her 11th trip to the OR (not all of those were major surgeries, but all involved general anesthesia), but the last 4 or 5 of those were with Dr. Puder in Boston, and the ones before those were all with the same team of surgeons during her NICU stay...
Every hospital does things differently, so this will be a first-time experience all over again for all of us, we won't be feeling like "veteran" surgery parents this time around. Pair that with the fact that the doctor doing the surgery has met her all of twice for a grand total of about 10-15 minutes and seems to have no understanding of her complicated history... and then he told us we'd "have to remind him" that Faith is allergic to PDS sutures because those are what he usually uses... Needless to say I am feeling pretty nervous about trusting her to this doctor. It's kind of hard to explain I think, or hard for people who haven't been in our shoes to understand why it makes a difference, but the surgeons who took care of her in the NICU did every surgery she had from the very first one when she was just a few hours old to the last one the week before she got out. And Dr. Puder so obviously cares deeply about his special patients that it was incredibly easy to hand her over to him for surgery... This guy makes me feel like I need to write her list of allergies in Sharpie across her belly, since apparently they won't be listed on a hospital bracelet or else they just won't check the bracelet...
I've gotten a bit of a lesson from God through all if this, too. Last year when Faith was diagnosed with the VUR and they said they would put her on antibiotics for a year and watch her, I felt very strongly that the antibiotics were a bad idea and we should probably just do the surgery, but I brushed that feeling aside because I didn't want her to have to go through another surgery. Then, when the antibiotics did what I thought they would and totally messed up her gut flora, I thought again that we should just do the surgery and get it over with, but again I brushed it off... Now I am kicking myself for not listening to what I apparently knew all along was the solution, and praying that Faith won't have any permanent damage as a result of my stubbornness. Dave and I are afraid that she's been having kidney infections all this time, looking back now and knowing that the VUR was not resolved... A lot of her "mystery" symptoms would fit into that possibility (the random unexplained throwing up, the sudden onset of bedwetting when she NEVER wet the bed before, her complaints of pain in areas that didn't make sense for gut stuff...).
Faith "driving" the tractor on her field trip to the dairy farm today
At this point, the surgery is pretty much guaranteed to happen, because as far as we know they won't be doing a pre-op VCUG. So, rather than asking for prayers for healing, we are asking for people to pray that the surgery and recovery will go smoothly- as well as or better than they expect it to go, and that she won't have any lasting damage or negative effects from the VUR or the surgery. She hasn't had many things go as easily or smoothly as expected in the past, but we firmly believe in the power of prayer, and would love prayers from anyone who might read this!

Thursday, May 2, 2013

It's been awhile...

I can't believe I haven't posted since shortly after Faith turned 3! Such is life with three kids, I suppose... not a whole lot of spare time.
My favorite shot from the family pics we had taken this past fall- it showcases the personalities of the kids pretty perfectly! Faith strikes this "model" pose in a lot of pictures...
Faith is now 4 1/2, and almost done with preschool. She is "normal" in virtually every way, doing everything other kids her age can do, and incredibly smart- must be all of the fish oil! She will be too young by about a month to start kindergarten in the fall, but she is definitely ready, so I am planning to get around the district's cutoff by homeschooling her for kindergarten this fall and having her test into first grade the following year.
Preschool has been a bit of a challenge for her immune system. We weren't expecting it to be quite as bad as it has been, since Noah was in kindergarten the year before and presumably brought home a lot of germs, and it was never an issue... Starting out the year though I think she was sick at least twice a month, which is a pretty big deal when she only goes 2 days a week! Somehow she avoided getting the flu, in spite of Noah and I both having it, so that was definitely a blessing. It seems like every little cold she gets lately results in a week of vomiting, so I hate to think what the flu would have done to her!
Faith's first day of school!
In my last post I mentioned that she was going to be tested for vesicoureteral reflux. She had that test (and it wasn't traumatic at all- she didn't cry or anything!), and it turns out she does indeed have VUR. We took the "wait-and-see" approach, where they put her on a daily low-dose prophylactic antibiotic (Bactrim) to prevent UTI's and then wait a year and do the test again. She'll be having that follow-up test done on the 15th, and we are praying it shows that the issue has resolved on its own. If it hasn't, she will be having surgery to fix it. There is a less invasive procedure they can do, where they inject a kind of gel into the spot where the ureter enters the bladder, to give it a sort of "faux-valve" so that the urine can't back up, but with as many strange reactions as she has had in the past to random unexpected things, we don't like the idea of putting anything into her body that couldn't be taken back out if needed. So, if she needs it, she'll just have the regular old, unfortunately more invasive, surgical procedure to fix it. Like I said, we're praying we don't have to consider either of those options. Selah actually had only a 20% chance of growing out of her VUR by the time she was 5 years old (because of the grade/severity she had), yet miraculously when they did the follow-up test on her (6 months after she was diagnosed) hers was completely resolved! Hopefully Faith will follow suit.

The daily antibiotic idea didn't last very long, because it caused her to have bacterial overgrowth within a month or so of starting it... so we stopped that and treated the bacterial overgrowth. Since then, she has been cycling with the bacterial overgrowth about every 6 weeks, and we've been treating it when it comes back with an antibiotic called Alinia and a probiotic called Florastor. That combo works really well, but the probiotics are expensive and not covered by our insurance at all.
We can't figure out why the bacterial overgrowth continues to come back in spite of treatment... it goes away every time we treat it, but still pretty much every six weeks or so, it comes back again. Faith has stumped the docs again too, because consistently the week before the bacterial overgrowth comes back, she has 2 or 3 random incidents of "sleep-vomiting", where she will cough once or twice and wake up covered in throw-up.  Then the next week comes all of the typical bacterial overgrowth symptoms- the excessive (and stinky!) gassiness, diarrhea, and stomach pain. No one seems to be able to understand why she is throwing up in her sleep for no apparent reason, and they don't think it's connected to the bacterial overgrowth (but the timing seems awfully suspicious to me...).
Picking out a pumpkin on her field trip to the farm
We saw her GI doctor this past Monday, and we've decided together that it's time to see if we can root out the cause of the recurrent bacterial overgrowth. Next Wednesday, she's going to be having a UGI with small bowel follow-through to see if there is an anatomical issue (like her bowel being dilated again, or something like that), or if she's having motility issues again. Funny little aside- when the scheduling person called me, she said, "It will probably take around 4 hours," to prepare me to be there awhile or whatever... My response to her- "Four hours would be awesome! I'm pretty sure the last one took about 20..."
While I hope that she doesn't have an anatomical (aka potentially surgical) issue, I would love to have a definite cause so that we can come up with a solution. It is so hard to deal with, because she is getting to an age where it really affects her emotionally. I hate seeing her sick, and it seems like lately she isn't feeling well way too often. The worst is when she does her "sleep-vomiting" and apologizes to Dave and I for throwing up in her bed, and cries and says how much she hates throwing up. I have always been thankful that she was too young to remember everything she's been through, and now she isn't too young anymore and it hurts me to see her suffer. Still, she is an amazing testament to God's healing power... I cannot believe that the rambunctious little tomboy princess constantly asking to ride her bike or go to school is the same baby I spent so many hours blogging about four years ago!
Faith's school picture from the fall- a little "before & after"... it makes me cry every time I look at it!
It occurred to me as I was looking over the blog to see when the last time was that I had posted that I never shared the story of Selah's miracle healing last October. We have always been firm believers in the power of prayer; there are too many aspects of Faith's story that can only be explained as miracles and answers to prayer for us not to believe it works! But ever since Selah was healed, our faith has been even more concrete.
When Selah was about ten weeks old, she got a fever and I took her to the ER. Turns out she had a UTI (which was the start down the road to getting her and Faith diagnosed with VUR), but the very first thing the ER doc asked when she came into the room was, "Has anyone ever said anything about her head?" No one had ever said a word, although we had noticed that it had kind of a funny shape... The doc recommended that we follow up with a neurosurgeon, to rule out a condition called craniosynostosis, where the plates of the skull fuse together prematurely. We took her to the neurosurgeons at Children's, where they basically took one look at her and positively diagnosed her as having sagittal cranio. They wanted to wait until she was 6 months old or so to do anything about it, which didn't seem right to me, so I took her to a neurosurgeon at the other pediatric hospital in Denver for a second opinion.
In the meantime between appointments, I found a great organization, Cranio Care Bears, that supports families affected by craniosynostosis, and it turns out that one of the founders lives about 20 miles from us. We met up, and she actually came along to the second opinion appointment. She has seen a lot of cranio babies' heads, just because of what she does, and she also agreed that Selah had sagittal cranio. The second opinion doc believed Selah had cranio too, and we scheduled a CT to confirm the diagnosis.
The whole experience of having a second child with a 1 in 2500 birth defect had majorly shaken my faith and I was feeling pretty depressed about all of it. On top of that I was having a pretty hard time adjusting to having three kids, and then Dave left to go hunting. I went to church that Sunday and found our pastor afterwards, crying about how it wasn't fair, and when was it not going to be our turn for all of the bad stuff, etc, and he offered to pray. Selah was in a sling on my chest, fine and dandy, her normal mellow self, and then he put his hand on her head and started praying. She screamed, like she was hurt, until he finished praying, and then she was fine again. On the way out of church, a friend saw me and asked what was wrong, and also offered to pray for Selah. The SAME THING happened- Selah was fine, but as soon as the friend started praying and put her hand on Selah's head, she started screaming. Then she finished praying and Selah was fine again.
A few days later, I took Selah down to the hospital for her CT, and an appointment with the neurosurgeon to discuss the results. She had the CT scan, and then the neurosurgeon sat down with me in front of the computer and showed me every single suture (the joints between the plates in the skull) in Selah's head. Every single suture was open, not a single one was fused! We believe without a doubt that this was a miracle.
I could say I will update after the tests Faith has coming up, but I'm not sure anyone will believe me... I will definitely try though! :)

Sunday, November 20, 2011

Look who's 3!

 Sometimes it's hard to remember where she started...
It's hard to remember because Faith is doing amazingly well. She is pretty much completely caught up with everything developmentally; her latest skill is jumping!
On a slightly less positive note, we found out this week that Faith's little sister, Selah, has Vesicoureteral Reflux. Basically, the tubes from the kidneys to the bladder (ureters) are supposed to be one-way, protected with a valve-type system where they go into the bladder. Selah's ureters apparently go into her bladder in a different way, so the urine is able to travel back up to the kidneys from the bladder. She has about a 30-40% chance to grow out of it, so for now she is on antibiotic prophylaxis to prevent her from getting UTI's (because they could cause kidney infections/damage/scarring). In 6 months, she'll have testing again to see if it's gotten any better, and if not, we'll talk about options.
And, because Faith has also had at least one UTI, she will need to have the same testing done ASAP, because there is a 1 in 3 chance that she actually has the same thing. I am finding that to be the most disturbing part of this... Selah will get better, whether she grows out of it or has a procedure to fix it, and she won't remember any of it, so I'm really not worried about her. Faith has been through so much already, and thankfully to this point she has been too young to really remember any of it. I'm afraid she will remember this testing though... it was traumatic for me/Selah, and I'm imagining it will be significantly more traumatic for Faith :(
The test is a VCUG, where they put a catheter in, then fill her bladder with contrast, then take pictures under fleuroscopy as she pees to see if it is refluxing up to the kidneys. Not fun. Holding her down for testing as a baby was one thing, because babies have short memories and the hugs at the end of the test usually erased the trauma. Holding down a (really strong!) three year old is my idea of torture, for both of us. I am crossing my fingers that we might be able to get a sedative for her to take before the test...
Anyway, I will post her results after she has the testing!

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