Where does the time go?

I'm not sure where the time goes, but it flies, right before my eyes.  Brooke is rocking and rolling.  She's had a wheelchair since she was about 18 months old.  It took little smarty pants a whole 5 minutes to figure it all out.  We're working on walking, more like hopping, with a walker with her.  She's definitely 2, she's got a strong personality for a 2 yr old, to say the least.  She holds her own and doesn't let anyone get the best of her, especially her big brother.  Its so great to see them play so nice together, and fight, yes, I love to see them fight and argue over things, it's good for them!

Braxton is growing like a weed.  I told him I was going to ask the pediatrician for some medicine to keep him small or even shrink him so I could have a little boy, not a big boy, for ever.  I think he nearly believed me and was a little scared I might actually find something.  He just turned 5, but is going on 30.  Some days I have to remind myself he is only 5.  I have lots of pictures and updates to share.  I'm going to try to post some in the near future.  I promise, some day...

Brief update and some old updates from Feb 2013-July 2013

So far behind - I’ve got 7 months to go to get caught up.  The below are month by month updates I typed up a while ago, hoping to get further than I did.  Just a brief up-to-date update; Brooke is doing awesome.  She’s still rocking and rolling, proving her Neurosurgeon wrong.  She’s army crawling all over and is up on her hands and knees often and starting to do a little crawling while on her knees.  She sits up 100% and transitions from crawling, sitting, and she’s beginning to pull herself up on her knees.  She’s beginning to go up stairs on hands and knees (not like a typical, full able bodied child, but she’s doing it Brooke’s way on her time table).  The stairs are smaller carpet covered ones on the indoor slide at daycare.  She has a stander now too, which is good for her to be in, but she does not like being confined to one place.  I need to see if we can add wheels and make it dynamic so she can roll around while in it.  I’m also trying to figure out if we can get her a ZipZac wheelchair for the summer for outdoors with her peers.  Her SB clinic team is not the biggest fan, but PT and I think it would be great for her to be able to get around and explore outside like her peers do.  One major obstacle, the price.  Since we have private insurance, they only cover wheelchairs every so many years so they would not cover the ZipZac and they are NOT cheap.  Brooke is scheduled to go back to the Spina Bifida clinic to see all her Dr.s in April, so we’ll get the scoop then.  Anyway, it’s late, I have a ton to fill everyone in on, but I have 7 more months to go.  So far behind...  someday, someday...

July - Brooke had lots of xrays, ultrasounds and Dr visits.  Kidney ultrasound showed her kidneys are healthy and she has no reflux.  She’s emptying her bladder on her own still and has good pressure, which is a huge ‘hooray’.  This means no cathing (draining the urine from the bladder with a catheter), for now.  She had another head ultrasound, still proving her Neurosurgeon wrong, couldn’t be more proud.  ;-)  Still shunt free.  Brooke popped a couple more teeth.  While drying her off after her bath, she laughed with her mouth open wide and low and behold, 2 upper center teeth had broke through.  

June - I can’t even remember June...  Brooke is still getting PT twice a week and her PT, Ann is awesome.  They’re a great match.  Ann is constantly pushing Brooke and Brooke is loving it.  Brooke is rolling over now from back to belly.  She has got abs of steel.

May - Brooke had her another muscle test and her first MRI on the 10th.  MRI was mainly of the brain.  Her Chiari II Malformation is not very severe, but it is there.  Her Neurosurgeon, Dr. Bowman, was really pleased with the scan and is always happy that Brooke is proving her wrong.  Brooke keeps getting A+’s from her so we’re stoked.  

Brooke is already growing out of her little AFOs.  They’re cute, but I’m not the biggest fan and after what we thought was the start of a pressure sore, I kept them off for a week.  In that week of no AFOs Brooke’s PT, Ann, was tickling her lower legs and noticed movement in her right big toe.  The movement in her big toe goes along with function at the L4 (lumbar 4) level.  Considering they feel her lesion level is around L2-3, that is great to see.  Ms. Sabina, the best daycare provider on the planet, noticed Brooke moving her feet slightly as well.  I don’t like having the braces on for 23 hours a day, as we were told they should be.  I feel her little feet and lower legs need some exposure and room to move, what little they can, but still some room to wiggle that little toe if that’s all it is.  Needless to say, this mama was excited over a little toe movement. She is not weight bearing on her legs and likely won’t be for quite some time. The prayers are working though, please keep them coming.  

April - We got a tooth, make that ‘teeth’.  Also, casts are off, YAY!!!  Casts are off and now she’s in AFOs.  Her toes look squished and her poor little tibia and fibula are bent and bowed from trying to grow in them, but I keep getting reassured they will grow straight and correct themselves.  The AFOs have taken just as much getting used to as the casts in the beginning.  These are more friendly though.  I can take them off and massage those cute little feet and toes anytime I want now.  It’s the little things that excite me.  I love those toes.  Brooke is still feisty and we’re starting to work on tummy time more now that the casts are off.  She still hates every minute of it, like most babies.  

March - we spent the month of March in casts.  On the 19th we were at the SB clinic seeing all the doctors once again, standard procedure.  Brooke saw ortho and she got her casts swapped out.  I feel so bad for her little toes and tibia and fibula which really have no where to grow in the darn things.  Hate them.  She had another head ultra sound which shows her ventricles are holding steady and no need for a shunt or other intervention.  At this point her NS thinks she would try a different procedure before putting in a shunt.  They’d try something temporary like a reservoir or try the ETV, I believe this is the procedure she was speaking of.  The ETV is a procedure to use another ventricle to help circulate the CSF instead of a shunt draining it off into the abdomen. It would be great to avoid a shunt all together since its one more thing to constantly monitor and likely stress over.  Praying she never needs one and that her head ultrasounds keep showing that she’s doing just fine without one.

February - Brooke turned 3 months.  Time is flying.  Work is insane for me right now with our project underway.  I go non-stop sun up to sun down and a few times in between.  I’m still exclusively pumping since Brooke prefers her bottle.  I can’t blame her, it’s a lot less work.  Foot surgery  -  So Brooke ended up getting her foot surgery on the 27th.  We spent the day at Lurie Children’s and all went well.  She did great and came out of the anesthesia just fine.  They didn’t have to heavily sedate so it worked out that she was awake and doing great by late afternoon so we got to bring her home early evening.  They ended up putting pins in both feet.  The ortho also misinformed us when she told us she’d be casted for 3 weeks, that was a mistake.  She ended up being casted for 3 weeks straight, then another 3 weeks on top of that.  Yes, 6 more weeks of the darn casts.  So glad that is done and over with.  In the end we got so used to them, it really was nothing.  We’ve moved on to AFO’s, they take getting used to to.  I’m not the biggest fan but we’re all getting used to them.

Not so lucky: Foot surgery is scheduled

Unfortunately, we’re still in casts.  Brooke’s heel did not come down enough and it doesn’t appear to be willing to do it on it’s own.  We’ve scheduled her foot surgery for Wednesday the 27th.  If she doesn’t fall ill, it’s a go.  She will have the tendon release surgery to help her right heel come down into place.  She’s also going to have a small pin put in her left foot to help keep the two major bones in the middle grow and move together better.  Both of these minor surgeries will help ensure she has a good foundation to stand on.  Even though they are minor surgeries, it’s still surgery on my 3.5 month old baby girl.  Please send some more prayers her way.  I’m hoping they’ll let her come home early evening and not keep her over night, even though it is technically a 23 hour observation procedure.  It will all depend on how the surgery goes and how quick and well she snaps out of the anesthesia.  Praying all goes well.  After the surgery she’ll be casted again for 3 weeks.  This time it will only be one set of casts that stay on the whole time which worries me.  Her little legs grow in them and her lower legs seem to bow a little already, but the ortho doc says not to worry and that they’ll straighten out with the bracing and as she grows.  I still worry.  Which brings us to bracing.  After all of this casting and surgery, she will then be fitted for her first braces, starting with AFOs.  She’ll have some type of these forever, but for about a month after the casting she’ll have one more set to wear at night that keep her knees in the deep bend so we don’t lose any ground on her flexion.  

I’m counting down the days until we’re done casting.  Just want to massage those cute little feet and toes again.  

Please keep Brooke in your prayers and I’ll update after the surgery.

Have a great weekend!

Angela

RSV, I think you got the best of me, but not Brooke

Dear Life, please give me a break from all of these curve balls.  I need time to heal. 

We had some more serious curve balls thrown at us over the past week and a half, and I’m not sure how many more I can take.  Brooke came down with what appeared to be a cold.  It started with a cough, then the snots, phlegm for those who like the more formal terms.  It got much worse by Saturday night.  She had a brief low grade fever and we were up most of the night trying to clear her nose and helping her to eat.  She was only eating about half of her normal intake at this point.  Sunday things didn’t get better, but no worse either.  Monday she headed to the Ped with Steve to get checked out; all was clear other than the severe cold symptoms.  Then came Tuesday, Braxton’s birthday and this is when the fun began.  We were at our scheduled clinic appts, and when we sat in the room to meet with Dr. Bowman, Brooke’s Neurosurgeon, she started wheezing and was having a hard time breathing.  They grabbed a pulse ox and her O2 count was in the low 80s and even dipped into the 70s, so they put her on oxygen, called an ambulance and off we went to IL Masonic.  We HAD to go to the nearest ER because her status was not stable.  She got a nebulizer treatment of Albuterol on the way, a whole 5 minute trip. 

Once in the ER a team went to work to get blood drawn and off for testing, mainly RSV and Influenza.  We were told they’d have the results in a couple of hours, only later to find out they send them out for testing and we didn’t actually get the results until Friday morning (blood work was done on Tuesday).  Needless to say we ended up getting transferred and admitted to ‘Observation’ at Children’s a few hours later.  I felt bad for Brooke and for Braxton, it was his birthday after all.  Thank goodness for our fabulous daycare, they had a party for him and his buddy who shares the same birthday so he had a great day regardless. 

We ran out of our 48 hr max stay in observation at Children’s so they moved us up to a penthouse suite on the 21^st floor, too bad the lake is gray and dull this time of year.  We spent 3 more days here waiting for Brooke’s O2 count to go up when she slept.  Her poor little lungs just couldn’t take in enough oxygen to keep her levels in the 90s while she slept.  They suctioned her so many times, deep suction and just nasal suction that she started screaming the minute she heard the machine.  She was so hoarse from the irritation she could hardly cry, it was so sad.  It is the first time I heard my baby cry a ‘true’ cry, a painful - help me cry, not the typical ‘I’m hungry’ or ‘mad’ cry.  It broke my heart and brought me to tears, but the suctioning had to be done

There were many student doctors keeping a watchful eye on her and the Attending’s.  One of the student Drs just was in awe of her and would always stop by to see her.  He actually finished feeding her and watched her while I ran to Walgreen’s to purchase a humidifier for her one afternoon.  The Attending said it was good for him because he couldn’t be a Pediatrician without ever feeding a baby, so it worked out well.  J 

By day 4 I was getting a little delirious and at the end of my rope.  What we thought was going to be a 2 day stay turned into 5.  I finally asked for a chest x-ray Saturday morning, it was mentioned, but they were going to wait until Monday if nothing changed.  Thank goodness one of the Dr’s agreed with me that we shouldn’t be waiting until Monday to move to protocol 2.  By this time we had gotten the positive results for RSV and they called her condition ‘bronchialitis’ the whole time, so she was being treated for the right issue and her lungs were clear, no infection.  It was just taking a while to get this virus out of her system.  I snuck in her probiotics and bought a humidifier in hopes of them helping, not sure if they did or not, but they didn’t hurt because she finally took a turn for the better on Saturday, mid-day and we were released that night around 7pm.  Thank God!!!

Happy late Valentine’s Day! 

We made it to week 5 of casting

This may be our last week, woohoo!  Not 100% sure yet though, we’ll find out later today.  Her knees have over a 90 degree flexion which is awesome and her feet are fairly corrected, so much so that if after this week her heel on her right foot has come down enough (her right foot had the vertical talus, but now we’ve discovered, not a full vertical talus, but only partial), she may not need to have the tendon release surgery.  I’m hopeful for no surgery.  Even though the surgery is minor, it’s still surgery and she’s a baby, my baby.  I’d prefer no surgery. 

After the casting is complete she will be fitted for braces.  She may have 2 sets.  A set of AFOs, which will be below her knees for during the day and a pair at night to keep the flexion in her knees.  The pair at night for the flexion in her knees would hopefully only be needed for a month.  The AFOs, which I believe stands for ankle-foot-orthotic, are something she will likely have her entire life.  These will help compensate for her lack of muscle in her lower legs.  Only time will tell, but I’ll update with that news when the time comes.  Until then, take care and please continue to pray for our little girl.  She’s still shunt free and I pray every day she stays that way.  

So we lost a cast, oops, make that two

Just a quick update...  Little Ms. Brooke slipped out of one of her casts.  We were told if they slipped out of place, got soaked or came off to call right away.  Well, 2 days after getting her second set put on, her left leg's cast slipped off at daycare Thursday morning.  Steve was able to go in that afternoon for a replacement, but oops, later that night the replacement slipped off.  Think we have a little Houdini on our hands.  Needless to say, she has her third cast on for the week and they have rigged her some suspenders.  I'm going to have to take a picture and upload it.  They're made of velcro, but so far her casts have not slipped.  They'll reuse them for her next sets as well.  She gets her next set bright and early Tuesday morning.  I can't wait to get done with this step because they are a bit of a pita (pain in the a..).  Took me a few tries to come up with a 'best practice' for diaper changes and I would really love to get her in the bathtub again.  Wipe downs just aren't the same.  Hopefully only 4 more weeks, but could be as many as 6.

The rest of the Brown House is doing well considering we run on much less sleep these days.  We're gearing up to celebrate Braxton's 3rd birthday soon.

Thanks again for all of the prayers and positive thoughts!

Angela

Pictures... Last one is of her casts

Brooke is doing great and her back is healed

Brooke’s back is healed, yay!

First, I have to ask, is it really 2013???  Did anyone else blink and discover Christmas and New Year’s came and went???

Grandma and Grandpa Morehouse spent New Year’s with us.  We actually got my dad on an airplane and the flights went well - thank God, or we may never have heard the end of it.  I think he got a little bored while here and was ready to get home to find something to keep him busy, but I know they both enjoyed their time with Brooke and Braxton.  You can tell by the large smiles on their faces in all of the pictures.  

So, where did I leave off...

Regarding Brooke’s newborn screen; we saw a geneticist and after some blood tests and some drilling questions for me by the idiot doctor (whom I really wanted to slap - maybe I’ll share later, but it will just put some people in a bad mood) we found out that Brooke is a carrier of the Duarte Variant gene for Galactosemia.  What does that mean, well she’s like 1 in 20 people who have a low level of the Galt enzyme that digests/breaks down dairy (I believe that is the name and the main function), in other words, nothing.  She will probably be like her mama, big brother and grandpa - not friends with dairy, but other than that, it really doesn’t mean anything but could pose an issue to her children depending on her husband’s (hoping she’ll be married before ever having kids) genetic make up.  So nothing to worry about there.

At our last clinic appt Dr. Bowman was so happy with her healing progress that we get to wait a whole month before seeing her again.  She’ll get another head US at that time as well and we’re keeping a close eye on her for any changes, but so far she’s rocking with no issues.  We were given the ok to have Brooke spend all day on her back if necessary (not literally, but she can spend as much time on her back as she wants now).  Ortho wanted the all clear before casting, so our next topic, ‘casting’.

Casts and Ortho update - Brooke did get her first set of casts.  she’ll be recasted every week for the next 6-7 weeks.  She responds really well to PT and she has more mobility in her knees than at our last appt with ortho and I haven’t even been doing that much PT on them, she’s an amazing little bugger (shame on mommy though, it’s hard to squeeze everything in.  The casts are a bit of a nuisance when changing her diaper, but we’ll get by.  They seem to bother me more than they do her.  She’s a very happy, mellow baby, except when she’s mad.  She lets you and the neighbors know when she is mad or does not like something, mainly being bothered when she is sleeping.

We met with the EIP coordinator again and a developmental and physical therapist for an evaluation.  It was decided Brooke would have PT once a week while casted then we’ll likely move to 2x’s a week once her casts are off.  There were no developmental concerns at this time.  Since she is so small they did recommend another developmental and OT re-evaluate in 3 months.  Our coordinator has found a PT to work with Brooke at daycare which is great.  Ms. Sabina is so great and I’m glad things are starting to fall in to place.  I’ve been stressed out, still am, but not quite as much, with my return to work approaching.

Brooke also had a urodynamic test recently.  We have a follow up in a few weeks with the urologist, but the Dr and NP doing the test said they had no concerns, saw no signs of reflux, she has a perfectly shaped bladder that fills and empties just like it should.  This is truly a miracle because nearly all SB babies have some issues with bladder and bowels, and this can change at any given time and we’ll probably have to deal with issues as she grows, but for now we couldn’t be happier.  

Brooke has been doing her introduction to daycare this week since I go back to work next week (totally sucks, can’t believe my leave is nearly over).  She’s spent a 1/2 day on Thurs and today she is spending the entire day at Ms. Sabina’s.  Everyone loves her and Braxton was pretty excited about showing off his baby sister.  One of the other little boys at daycare told me that she was his baby too, so sweet, they all love her and call her their baby.  A couple of Braxton’s buddies, the girls, even gave up their bubbies for her to have on her first day.  

Braxton is loving his big sister.  He likes to ‘hold her in his lap’ on the sofa and he is usually a big help when asked.  He went to the dentist for the fist time and before even getting started he saw a container of chapstick on the counter and he got excited. I asked the dentist for him if he could have one if he was a good boy.  The kid will do anything for chapstick.  I think he was a little scared but he didn’t let on and he was very proud when finished, he said, ‘I was good and didn’t even cry, right?’.  Needless to say, he got his chapstick and he grinned from ear to ear.  Not sure what would have happened if there hadn’t been chapstick as the prize at the end.  

I will continue to update the blog as we go and upload some pictures too.  I want to thank everyone for all of the prayers and positive thoughts.  Brooke is doing so good, it truly is a miracle.  When we were given the diagnosis, we were also given a book of all the possible things that she may have wrong with her, or that we may have to deal with and so far, we are issue/symptom free.  I pray it stays that way, but if not, we’ll take it as it comes and do the best we can.  I do believe all of the prayers and ‘ancient chinese secret tea’ have really helped and keep her going.  I still worry about her and it is hard to leave her at daycare, but she has to grow up and I have to remember, she will be just fine. 

I apologize for typos and the block style writing, but I’m exhausted and really wanted to get an update posted - so, sorry! 

Thanks again, until next time...

Angela