Every Second Counts

You know that show 24. The one where Keifer Sutherland saves the day one hour at a time.  Everything is in slow motion, and your really not sure what's going on until the very last seconds of the show.  I felt like that yesterday.   Not the save the world part, the realization that every second counts.

Kamryn has a routine.  She gets up, I change her diaper, she has a bottle and takes her medicine.   Later a shower, her hair is fixed and heart beat monitored, then her temperature taken. So yesterday she didn't really want her bottle.  She laid on the couch, as I tried to convince her into taking the bottle.  I realized then, her eyes had shifted to the right and she wasn't responding to my voice.   I placed my hand on her chest, and desperately tried to make my self heard.  After about a minute she came out of the episode and was better, but tired.  She then did it again 10 minutes later.

We needed to be at the church for VBS and so we showered, fixed hair, monitored her heart and temp and were on our way.  My very good friend Jaime asked as we arrived, "Is Kamryn feeling alright?" I try really hard not to be alarmed.  Drama is not where I thrive, it makes me crazy.  I asked her what she was thinking.  It was good to know I wasn't alone in my motherly instincts. 

We left the church and took Kamryn to he play group.  She was fully recovered by this time.  She then had another one, I think.  It's really hard to tell when your driving.  She didn't seem any different this time, so I took her into play group. I spoke to one of the ladies there and she was going to watch her.  It didn't happen again.

I called our pediatric Doctor.  He wanted the Cardiac team to weigh in.  Their thoughts were to have her seen by her peds doc and go from there.  Kamryn was squeezed into a very tight schedule.  Of course that's when my car wouldn't start, she was at school, and I needed my neighbors help.  With my car jump started, and Kamryn picked up we headed to the Doctor.  Mark in tow.  (poor boy)

At the Doctors office we discussed the episodes.  Kamryn had experienced MINOR seizures. These are not at all harmful to her.  She will need to have and EEG, and see a neurologist.  While her medication can cause seizures, it's not likely.  With everything she has been through this might be a left over brain trauma, related to her long stay in the hospital.  Again, not likely.  The possibilities are endless.  Will it happen again?  Possibly not.

After Kamryn's nap  yesterday she was fine and back to her exploring, sing song little self.   My heart jumped every time she went up and down the concrete stairs. As hard as it is, I have to let her explore, discover and learn.  (My fear is she has a seizure and falls.)  She has no idea how desperately I wish we lived in a plastic bubble. 

This was what I woke up to this morning.

 

Because Every Second Counts.

Kelli

 

Constant diligence

This last week Kamryn saw her Dr. for a fall she had taken while we were in Idaho and some imbalance.   The fall she took was scary,  but she recovered quickly and was cleaned up and returned to playing.  Her adults were almost in tears, and fearful of what could have happened.  She was fine, we were a mess.  (Mike was not with us in Idaho, and didn't know about the fall until we came home.)  A few days after arriving home I noticed her imbalance.  I made an appointment with the Dr.  We discussed her fall,  knew she didn't have a concussion, but were a little puzzled by the imbalance.  A quick look in her ears and the imbalance issue was solved.  She has a blocked ear tube.  Hooray for simple things. 

However, the same day she saw her dentist.  No cavities, but I asked a question.  "Is Kamryn's palate smaller than her lower jaw?"  The answer was, "Yes, and I would recommend you see your orthodontist."  A week latter she was able to see the orthodontist.  He made specific notes and recommended she see someone who could see patients with these kind of issues, that can be related to heart problems.  A children's hospital.   

Children's Hospital has trained me well.  I sent a message to them and to Kamryn's primary Dr.  There are several possibilities.  One of which is the pacifier, that comforts Kamryn, is causing the muscles to shape a smaller palate.  Other ideas are her ears, her adenoids, her familial genetics (small people) and a possible unknown syndrome.  While there are no syndromes currently related to non compaction, we may help discover more about non compaction. 

So what do we do about this.  Kamryn will be seeing a Cardiac geneticist, and possibly a dental specialist.  Will we start to widen her palate any time soon.  NOOOO!  She is to young.  The point of all of this is to discover as many of her medical issues as soon as possible, so that they can be addressed when needed. 

There are days when I could kick myself for asking so many questions.  Sometimes ignorance is bliss.  However, if this can help her grow to be happy and healthy, I'll do it.  I'm so happy she is growing and changing and beginning to spread her wings.  That little "run" of hers make me giggle with joy. 

So as we approach July and August, we will have several more appointments in Seattle.  It's standard procedure to do a neuropsychology evaluation after a transplant. She will have that in July.  August is a neurology appointment and then the genetic sometime in the near future.  Kamryn doesn't have to go to  the Cardiologist until September,  she is doing very well. No issues there. Hooray. 

Please pray that this issues for Kamryn's jaw are purely structural. That the neuropsych appointment goes well and supports the services she needs. That neurology will know what and where to look for signs of non compaction among Kamryn's other systems.  She continues to have no issues with her heart.

Thank you

Kelli

 

A weekend away with family...

Last week we prepared to go out of town.  For most people that means a suitcase and maybe a travel bag.  For Kamryn it means much, much more.  She of course has your normal baby stuff.  Diapers, wipes, bottles and a pacifier.  (We really need to get rid of the bottle and pacifier.)  But Kamryn requires 5 different medications, a stethoscope, thermometer, syringes for medicine, and the just in case stuff.  Like:  Ear drops for that ear infection she doesn't have, but could get.  I wrote lists, added to the lists and checked them just like Santa. Needless to say I over packed,  especially on the clothes part. 


It was beautiful....

We spend days on the Oregon Coast without jackets!  Here are some pictures.

 

We had so much fun!!!  Kamryn was such a good girl even with few naps and sleeping in a strange place. 

 

Prior to getting to the beach we visited the OHSU ER for what appeared to be a return of Kamryn's C diff.  The nurse gave us hospital grade bleach wipes to keep everyone else healthy.  Her test came back negative, however the symptoms remained the same.  With probiotics we made it through the weekend.

 

Kamryn was able to roll around and play in the sand. She laughed and giggled, playing with her siblings and her cousins.  The girls were an enormous help to me,  they took her and played, or got her dressed and fixed her hair. 

 

 

It was a very relaxing weekend.

 

(posted by Kelli on Lexi's site)

 

 





 

 

My belly hurts!

Kamryn has been feeling under the weather.  She got the cold that has been circling the house hold.  With a stuffed nose, coughing and little to no sleep she has been on edge.  On edge for her means, "hold you mommy". 

On Monday Mark saw the Doctor for ear pain.  She just had a cold then.  By Tuesday she was complaining, "Mommy my rib hurts."  With a 100+ degree temp, pain in both her ears and her side, I decided to make have her seen by the Dr.

In his office, she filled her pants.  When I changed her I noticed blood in her stool.  This wasn't blood from a large bowel movement, this was blood from her intestinal tract.  Something was wrong.  Labs were drawn, stool delivered and we waited. 

Finally, we had and answer.  C Difficile toxin.  By this time, Wednesday, Kamryn is feeling better. The question is do we treat a child that feels better?  C Difficile is a bacteria in your intestines.  Its there with all the other bacteria.  When the good bacteria is wiped out, say with an antibiotic, this bacteria can take over.  In the average human not a big deal, it's rarely even treated. 

Kamryn is not your average human being. Immune suppression means she doesn't fight things like the average person.  Most parents can take their child to the Doctor get a diagnosis, a plan, medication and be done.  Kamryn can't.  I'm required (gladly) to share everything with the transplant team.  Nothing is done for her without their approval.  Certain medications make her anti-rejection drugs ineffective.  So the question was, do we treat an child who feels better?  That question was posed to an Infectious Disease Doctor.

Thursday night the question became inert.  She once again became symptomatic.  Complaining, "my belly hurts".  By morning she has double ear infection, blood instead of stool, and a cough that would break your heart.   I was on the phone with her doctor and she was being seen as a work-in, with the idea that she may need to be hospitalized.

As we waited in the Doctors office I called Cardiology.  The nurse and I discussed Kamryn. Is she drinking , is she peeing, how is her over all well being?  My opinion was she wasn't sick enough to put into the hospital.  I was to have her Doctor call the Cardiology Doctor and discuss her care. 

I am pleased to say Kamryn is at home.  She wasn't admitted to the hospital, and is being treated with a medication that wipes out this bacteria, and possibly her anti-rejection medication.  She'll have to have more blood work next week to check levels. 

I feel very blessed that Kamryn is able to be treated at home.  Blessed too, that I can weigh in on her care and be heard. 

She hasn't said her belly hurts today.  That's a good thing.

Off

Today Kamryn seemed off, her lack of bounce, her need to be held and her complete compliance were clues.  It could be her ears, or something else.  We are only 6 days out from Cath Lab, which went pretty good.  There is no sign of rejection, the arotic arch is growing both from the donor and the native side.  It's still miss shaped, but it's functioning correctly.  I am fully aware of how quickly a little one can go from good to bad. My choice is to always error on the side of caution and go with my gut.  So I made her and appointment for a potential ear infection.  

The appointment was an hour and a half from the time I made it.  As I hung up the phone, she vomited all over me.  After a quick shower for both of us, our second one today, her hands started turning blue, and her feed didn't turn pink immediately after touching them.  Her chest was pink and she looked fine. 

It the Dr office her oxygen saturation levels were low and her heart rate was high.  A different pulse ox and warm hands changed the sat readings and the heart rate.   The doctor then examined Kamryn.  As he listened to her heart, he heard a murmur. He asked me about it, I thought she did have one.  In one thousand healthy kids 800 could have murmurs.  60 of those could be from birth defects the rest are benign and more than likely will go away by the next visit.  Dr. F is an amazing Dr.  What he heard wasn't alarming to him.  We finished our talk and I took Kamryn home.  It wasn't until I got home that I realized I didn't know if Kamryn had a murmur before. So as every  heart mom does, I called her cardiologist.  There response was really are you sure, we need to call him. 

The Drs talked.  The murmur is in her pulmonary artery and not a concern.  The blue hands and low profusion is probably dehydration and I'm to follow her symptoms. 

As I said before her primary Dr is amazing.  He called me last night after work and talked with me for about 20 minutes.   With the procedure last week there could have been a possibility of endocarditis.  Invasive procedures sometime allow vegetation to grow in the heart, that creates symptoms such as murmurs, fevers and swelling. 

We are confident that Kamryn doesn't have endocarditis.  The murmur isn't in the right place, there are no fevers or swelling.  She is good.

There are times I feel guilty for pushing my child into an already crazy schedule.  Not this one.  The key is to go in prepared with observations, and be ready to defend those observations. 

Cath Lab

Yesterday, we were at Seattle Children's Hospital for Kamryn's Cath Lab.   This is a yearly procedure that measures pressure, looks for rejection and over all health of her heart.  It is a long day full of waiting, entertaining a 2 year old, and speaking to multiple doctors, nurses and staff. The hard part,  letting a very sleepy, pre medicated baby out of my arms and into the arms of the anesthesiologist.  Prior to her departure Teed Nail prayed for all those involved in Kamryn's procedure. 

We then went to have breakfast with Teed.  The pager around my neck reminded me of the seemingly  unending days when the hospital was our home. It felt heavy and burdensome.  Then it rang,  I just about jumped out of my own skin.  Not because it startled me, but because of the memories of a day just 2 year ago.  The day my sweet baby got her new heart.  That day the pager would ring when the surgeons wanted to update the family on the progress during surgery.   Yesterday, as we reached the surgery desk, we were greeted by a smiling Doctor.  The surgery went very well.  Her heart looks good, the pressures have improved and he was excited to tell us the news. 

Later the pager went off again,  the nurse wanted the mom.  Kamryn was in tears, disoriented and just plan mad.  The little hoarse "hold you"  just about broke my heart.  But I couldn't hold her.  She needed to lay flat for 4 hours after the procedure.  So I laid across her bed, singing in her ear, holding her and stroking her little head.  She calmed and was ready for the ECHO, EKG and Dr Law. 

Kamryn's condition prior to the heart transplant is a rare form of cardiomyopathy. Non compaction is not a well studied or understood disease.  Kamryn has gross motor issues.  Dr. Law wants us to pursue more aggressively the cause of her delay.  Kamryn doesn't jump, go up or down stairs, or run and she falls frequently.  We will be seeing a neurologist and an orthopedist. 

Keeping a 2 year old quiet and unmoving for 4 hours proved difficult.  We resorted to almost 3 hours of Blues Clues, a dark room and lots of crackers.  The dose of Tylenol helped too.

Today Kamryn is back to her chipper little self, with a lot of clinging. We have nothing better to do today, but cuddle and watch some TV.  Maybe a nap too.  


Remember... our Blood drive

https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086


Thank you for your prayers. 

Psalms 111 1-4
Praise the Lord.^[b]

I will extol the Lord with all my heart
    in the council of the upright and in the assembly.

² Great are the works of the Lord;
    they are pondered by all who delight in them.
³ Glorious and majestic are his deeds,
    and his righteousness endures forever.
⁴ He has caused his wonders to be remembered;
    the Lord is gracious and compassionate.

Gifts (from January)

Welcome, I'm glad you stopped by. 


My blog posts have slowed down as our lives have sped up.  This month alone Kamryn has/had appointments, OT/PT, Doctor, Eye, blood work, and ENT. It has left us with only 4 days of "nothing scheduled" for the entire month.  If we aren't going to an appointment the phone is in my ear about an appointment, blood work, SSI, and medication refills.  Over all Kamryn is doing a great job of being two.  She is stretching her little wings and going to a class without mommy.  This is a big step for both of us really. 


Each person in Kamryn's life is providing her with a gift.  These gifts are of health, movement, site, hearing, and independence.  One of the gifts she received this month was the delivery of her medication.  A dear friend, working near one of the pharmacies we use, picked up the Rx and was able to deliver it to  us.  This gift saved me time, a trip and gas, Kamryn a car ride and a long nap vs. a short nap. 


While Kamryn was in the hospital waiting for her heart she received another gift.  With her hearts inability to efficiently pump blood and get oxygen throughout her body, a decision would be made to give her blood. After about 6 hours the blood would arrive and they would begin the 5 to 6 hour process of the transfusion. This small unit of blood would do miraculous things. It warmed her up, lowered her heart and respiration, the monitors on her head and kidneys would show improvement for oxygen saturation. Her color would improve a little, and she would begin to relax.  Her body didn't have to fight so hard.  This simple gift of blood gave her another moment, day and eventually a life time. 


I think of  a transfusion like this. 
Image your favorite cold weather drink.  Mine would be a cup of hot dark chocolate.  I hold that warm cup up to my face and feel the heat permeate my cold hands.  It's aroma fills my nose and senses with calm.  I give myself permission to sit and enjoy the flavor and aroma.   This simple cup of cocoa, gives me the gift of joy.


We are planning a Blood Drive with Puget Sound Blood bank for February 22, 2014.  You can sign up for this blood drive by using this site


https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086




Please consider giving someone the gift of blood through this Blood Drive. 


Thank you

Slightly more complicated

Kamryn has had several ear infections.  The month long antibiotics took its toll on her tummy, her sleep and weren't always effective.  Her primary Dr and an ENT both agreed that she would benefit from ventilation tubes in her ears.  Several questions were asked about her cardiac status and her reactions to anesthesia.  It is good to say both are stable.  With her Cath Lab coming up it was  thought  why not do the procedures at the same time.  She would only be put under once for both procedures.  Let's do it.....


Screech...Her Cath Lab is scheduled for February 4th.  This means referrals need to be made, Cardiac and ENT need to coordinate, an appointment for ENT needs to happen before the new procedure can be added and ...   endless phone calls, emails and prayer. 


Cath lab is a scary time for parents of heart patients.  There are endless things that can go wrong, or news that can devastate.  But it can also bring reassurance that there are no problems, no rejection, no needed medication changes.   For most patients, Seattle Children's Hospital follows rejection with an Echocardiogram. They reserve biopsy to once a year or when needed.


Currently, the plan is to wait for the referral and then work Kamryn in for and appointment with ENT.  This means her Cath Lab may be postponed.  I hope not.  I'm praying for all to go smoothly and for her to have the procedures on the current schedule. 


This has become slightly more complicated, but it's manageable.

Gifts LIttle and Big

Welcome, I'm glad you stopped by. 


My blog posts have slowed down as our lives have sped up.  This month alone Kamryn has/had appointments, OT/PT, Doctor, Eye, blood work, and ENT. It has left us with only 4 days of "nothing scheduled" for the entire month.  If we aren't going to an appointment the phone is in my ear about an appointment, blood work, SSI, and medication refills.  Over all Kamryn is doing a great job of being two.  She is stretching her little wings and going to a class without mommy.  This is a big step for both of us really. 


Each person in Kamryn's life is providing her with a gift.  These gifts are of health, movement, site, hearing, and independence.  One of the gifts she received this month was the delivery of her medication.  A dear friend, working near one of the pharmacies we use, picked up the Rx and was able to deliver it to  us.  This gift saved me time, a trip and gas, Kamryn a car ride and a long nap vs. a short nap. 


While Kamryn was in the hospital waiting for her heart she received another gift.  With her hearts inability to efficiently pump blood and get oxygen throughout her body, a decision would be made to give her blood. After about 6 hours the blood would arrive and they would begin the 5 to 6 hour process of the transfusion. This small unit of blood would do miraculous things. It warmed her up, lowered her heart and respiration, the monitors on her head and kidneys would show improvement for oxygen saturation. Her color would improve a little, and she would begin to relax.  Her body didn't have to fight so hard.  This simple gift of blood gave her another moment, day and eventually a life time. 


I think of  a transfusion like this. 
Image your favorite cold weather drink.  Mine would be a cup of hot dark chocolate.  I hold that warm cup up to my face and feel the heat permeate my cold hands.  It's aroma fills my nose and senses with calm.  I give myself permission to sit and enjoy the flavor and aroma.   This simple cup of cocoa, gives me the gift of joy.


We are planning a Blood Drive with Puget Sound Blood bank for February 22, 2014.  You can sign up for this blood drive by using this site


https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086




Please consider giving someone the gift of blood through this Blood Drive. 


Thank you


Kelli

A big girl now!

Kamryn turned 2 today.  Her twoness is showing it's ugly, but cute head.  She stomps her little feet, yells and sometimes hits.  When she doesn't get her own way, watch out.  She is quite able to tell you what she wants and doesn't want.  At times it's hard to hide the smile on my face as she bursts into a foot stomping, yelling, full on temper tantrum. 

Last year we had a big birthday party for her. This year is was a small family party.  And yet the celebration of her life is bigger and more impressive.  She is now almost 2 years post transplant.  Where has the time gone?  Her last visit to the Cardiologist was full of great news.  There are no concerns from a cardiac standpoint. 

February 17th marks her 2 year post transplant.  We would like to do something special for that anniversary.  This year we will be doing a blood drive sometime that month.  I need 25 volunteers, before I can talk to the blood bank.  Please send me a message through face book or on this site.  If you're not in the area please find a blood bank to donate to.  Date and times will be announced soon.


 For You, O Lord, have made me glad by what You have done, I will sing for joy at the works of Your hands.   Psalm 92:3-5

Thankgiving Complacency!

I've found myself to be complacent this Thanksgiving. Kamryn is doing well, we are all together in one place and most things are going good.  I've taken for granted the "smooth road" we are now on.

The last fee weeks have been difficult and have reminded me how far we've come.  The death of a cardiac baby at Children's in Seattle gave me reason to cry and hold my children tighter.  Two heart transplant in the same hospital also gave me reason to cry, but with tears of joy.  And again I held my children tighter.  With the announcement of  every transplant my mind and body raced back to memory of February 17, 2012.  Joy and sorrow filled me at the same time, hope welled as I tried to push the fear back down. Lives were being changed forever. 

My complacency had lead me to stop Fully Relying on God.  That darn, I can fix this myself, had reared its ugly head.  At Kamryn's last appointment  her Dr stated, "from a cardiac stand point she's fine".  A good reminder that I'm not the one that made that work. I was not involve in the creation of the heart Kamryn now has beating in her chest.  God designed, orchestrated and ultimately made the decision where that heart was to go.

There are several stories hitting the web about moms listening to the heart of their loved one transplanted into another.    The only transplantable organ you can actually hear, is the one I listen to everyday.  It's gone the complacency,  these last few weeks have hit hard. Reminding me to be thankful for a long, bumpy, seaming impossible road that lead us to be, all together in one place. For that I'm Thankful.

Kamryn's Happy Words!

For a few weeks now Kamryn has had fevers.  Not a continuous, high grade fever, but 99.-101 fevers spread over 3 weeks.  In the past few days she didn't want to eat, drank little and laid around.  All of my time has been, holding, cuddling, administering medication, temperature taking and heart rate monitoring.  I have been in touch with Cardiac and Peds Drs for the last few weeks.  I took Kamryn in to her Peds Dr on Tuesday, she was examined with no findings (nothing wrong).  Blood work was done and so we waited for results.  A test called the SED RATE was done.  It measures the inflammation in the body.  With Kamryn's immune suppression it  came back high.  One would think that immune suppressant would make the test false positive.  However, its just the opposite.  I makes the test look better, so a high result could a higher result on a general population person. This had her Dr concerned.  So Wednesday morning I call to talk with the Dr.  My gut instinct was to take her to Children's and run her through the emergency room to have her evaluated. Her lethargy, eating and drinking were worse.  So after a few conversation with several people it was decided to take Kamryn to Children's.
 
I usually have a bag packed, just in case.  I feel at times I'm crazy, for having it, but not in this case. We needed to catch a ferry in 20 minutes. (Praise the Lord my car actually made it there and back) We left around 3 and arrive at Children's by 5.

Children's ER knew we were coming.  Kamryn unfortunately wasn't able to enjoy her celebrity status, as she had another fever.   She was whisked away and into a clean sterile room. Transplant patients don't get  to spend much time in a waiting room. Information was exchanged, she was examined and then we wait.  She then had a chest xray and the process to for blood work started. 

A beautiful young NP came in to start that blood work.  By this time Kamryn is tired of being looked at and examined.  Kamyrn's veins are bad.  21 months of blood work have rendered them hard to draw on.  It didn't help that the day before she had 3 pokes for that blood work.  There really wasn't a vein accessible for blood work. But we tried. 

Kamryn has a dialogue.  She has heard these words for her entire life.  They are in no order: 
I'm sorry, good girl, good job, it's okay, I'm proud of you,  Yay Kamryn, hooray almost done.  They are sometimes mixed in with "okay mommy" and huge sighs. The NP while very experienced had never had a chronic child, with bad veins and a series of happy words.  As she pokes and fishes for the vein, Kamryn starts her dialogue.  Good girl, good job, I'm sorry ... all mixed with heavy sighs and tears.  She doesn't move, she doesn't resist she just lays there and takes it.  Her good nature is mixed with frustration at being so helplessness through out all of this.  But she is strong and I have learned a lot from her. 

Kamryn was released to go home last night from the ER.  She is on an antibiotic for something no one knows for sure is there. She is expected to get better in the next 48 hours.  But we all know what Kamryn time is like.  It may take longer.

 I will praise the Lord, who counsels me;
    even at night my heart instructs me.
⁸ I keep my eyes always on the Lord.
    With him at my right hand, I will not be shaken.

⁹ Therefore my heart is glad and my tongue rejoices;
    my body also will rest secure,

 

Psalms 16

The dress

Kamryn was an honorary flower girl in her sisters wedding.  Kjerstin pick out a dress and we ordered it off Etsy.  The dress came and Kamryn tried it on.  This dress was not her favorite.  It itched, was fluffy and made her miserable.  We would try it on occasionally in order to get her use to it.  Our encouraging "so pretties" couldn't make her love the dress.  And then a brain storm happened. If she wore leggings and a sweater, just maybe we could get her to wear it for a short period of time.  So we tried it.  Kamryn began twirling around in her "pretty" dress and saying pretty.  We had conquered the unhappy toddler, or so we thought.
Fast forward to wedding day.  I have now spent the morning preparing and directing family member who helped with the set up for the wedding.  I have an hour to get ready myself.  Having parented girls already, I knew that Kamryn didn't need to get in her dress until right before the wedding.  So with 5 minutes to spare, she gets dressed.  I now have a hysterical, screaming baby on my hands, and a large concerned audience. We move to Bev's office where on the floor she gets her hair done and her shoes on.  Mike comes in and says, "It may not happen and that's okay."  Kamryn begins to calm down with the help of Auntie Beth and a squirt bottle.  Auntie knows when to put a little fun into an almost disastrous situation. 
Kamryn was able to walk down the isle in her sisters wedding without a hitch. 

(see picture above) 

It has begun...

Usually Fall is my favorite time of year.  The leaves begin to turn, the menus' are filled with comfort foods, and the children are back in school.  I was okay with the change, until....  I started hearing those sounds that now make me cringe and want to run.  The achoo, cough cough cough, sniffffff...  You've heard them too, the unmistakable sounds of  communicable diseases that summer seems to whisk away.

So for those of us who deal with children of compromised immune systems, please use caution when your out in public. Your child's immunizations keep my child from getting something that could kill her. Hand sanitizer, keeps those nasty germs at bay.  My boys and those who come to visit wash their hands when they come in my door.  I'm encouraging no mouth kissing with Kamryn.  When it takes her  a month to get rid of an illness, a little hand washing isn't much to ask.

Thank you for my little place on the soapbox! 

Easily forgotten

Two plus years ago I discovered I was pregnant with our 5 child.  I went from not being pregnant to 4 months pregnant in one day.  That beautiful baby was born without a hitch and we continued with our much fuller lives. And then.... you know the story.... you prayed and you know the outcome.

It's days like yesterday that bring me back to that night in the hospital.  The fear, anxiety and waiting can make a person nuts.  Everything has been going so well.  Kamryn is not a child you look at and say she's sick.  She's a happy, healthy 20 month old with an enormous vocabulary and a duck walk. Her past is easily forgotten and yet.

Yesterday we spent 4 plus hours in the Doctors office here in Port Orchard.  She has had some diarrhea and one episode of vomiting. Dehydration is an issue with Kamryn on a normal basis.  When she gets sick it can be worse.  For an already dry child to get more dry is not a good thing.  The medication takes an extreme toll on her kidneys on a good day.  Dehydration causes medication level to be over the top and possible kidney failure. They measure dehydration by weight loss in small children.  Kamryn had lost a 1lb, 5% of her body weight. This is significant for a little peewee.  The second visit to the Dr showed she'd lost a little more weight.  Before seeing her he was ready to send her for IV fluids at Mary Bridge.  Thanks to that big Aubrey personality the Dr was satisfied that she would not need IV fluids.  She was no longer sunken, and anemic looking. We will visit the Dr again today.  While her symptoms are still the same she is doing better.  The 6:30am wake up call of mommy, mommy was music to my ears.  While I didn't want to get up, we spent some quality time together in the am. 

Her follow up visit was reassuring.  The Dr is pleased at her progress with fluid intake. We will see the Dr again next week.  I think now mom and baby need a nap.   

Really!!

Yesterday, I watched a news blurb about a young man back east that wouldn't be getting a transplant because of "non compliance".  The news media spun a story of a teen boy with issues of unlawful behavior.  They spoke with the hospital whose board had denied transplant list placement.  The hospital is of course not able to release information on this particular case.  But the media didn't ask about the painstaking process the board must go through to be put on a transplant list. The rules are not only set down by the hospital but by the UNOS (United Network for Organ Sharing) board. A patient must be able to follow a strict  medication regiment, eat right, make and keep follow up appointments and lab work. They must also meet certain criteria related to quality of life, and ones psychosocial network.

The weight of how very important a decision this is, falls heavy on my heart. If this child was not ready for the difficulties surrounding a transplant, then it would be prudent to deny a placement on the list.  Most teenagers that I know have an invincible attitude.  They are unaware of their own mortality.  It would be difficult to get most teenagers to stop and take medication.  A young man who might have an issue with authority may not have the discipline to follow such a regimented life style.

As we prepared for Kamryn's  transplant, we were asked about our level of commitment to this new life style.  They ask these question not only to find out your level of commitment, but because the donated organ is so precious. If one can't commit to following the program, then the organ has gone to someone who may not consider it or its donor valuable. Thus deny someone else who needs the organ a chance at life. 

I'm pleased to say that this young man has  been put on the transplant list as of today.  While I'm disappointed in the media and their poor coverage of this issue, I'm happy for the family.  I pray that they will understand the gravity of what they will receive and its cost. 

Update on the walking

A week ago we saw PT about Kamryn's walking.  She was prescribed orthotics, which I ordered on Thursday.  They were shipped on Friday and arrived on Saturday.  I put them in her cute little handmedown Nikes from Kjerstin.  With her first step she started walking different.  Actually moving her ankles, it was amazing.  So this week she has been working up to wearing them about 4 to 5 hours a day.  The orthotics help her muscles start from a neutral place, (instead of a negative place) in order to help her move to a positive place in her walking.  Kamryn would get tired from walking  before, it was a lot of work for her to do. Now she is climbing and starting to run.  While she does get tired it's not as frequent. I find myself chasing her more, which might explain why my hip and my knee hurt today.

Walking

Kamryn went to Holly Ridge today for an evaluation on her walking.  In Uncle Charlie Combs' words, "She walks like a duck."  She doesn't move her ankles, and mostly moves at her hips and knees.  Most babies are flat footed, as they learn to balance and walk that changes and they develop arches.  Not only does Kamryn still have flat feet she also has low muscle tone.  She doesn't know how to stretch her muscles and bend her knee to step down off the stairs or stand on her tip toes. So her ankles don't rotate.  Most recently, like in the last 2 days, she has begun to walk backwards.  This is a skill she should have developed months ago.

At Holly Ridge Kamryn was given exercises and games to play to increase the muscle tone in her legs.  She will be getting some orthotics to help rotate her feet outward and start the rehabilitation process.  We will have an appointment in a couple weeks to see how she's doing.  It was nice to know I wasn't crazy and projecting issues onto Kamryn.  The PT was able to explain why Kamryn has the issues with her legs and feet, which are in line with not moving and not learning balance at an early age.  Just wait she'll be playing soccer at age 5, and running with the best of them.  Well okay maybe soccer, there is that crazy mom who will need to be convinced.

Adventures in Potty training

Kamryn has been telling me when she needs to be changed.  She has never liked an unclean diaper, this is why I don't get to sleep through the night.  Her diaper is wet, she is uncomfortable and so I should be too. Right now it is a work on progress.  But she is doing very well.   What's funny is that an 18 month old is not expected to be potty trained and so no one sells underwear for a child that small.  Here's a  picture, enjoy!

Just 2 years ago

Two years ago on the Fourth of July, I tried to put on the Old Navy flag shirt Carol had given me to wear.  It didn't fit.  The next shirt I tried on made me look pregnant, I wasn't so I took that one off.  The next shirt I chose looked fine and the day began. 

Two years ago on the eighth of July, Mark tried to throw his shoe out the car window. Mikaela yell at him not to, I turned my head to look. As I turned back to look at the road I was headed into the back of a Nissan Titan.  Although we were only going 5 miles an hour the damage was extensive and the Pontiac was totaled. 

Two years ago on the Tenth of July. the pain in my knee was unbearable.  I had clearly injured it in the car accident.  I went to urgent care, for a diagnosis and a cure for my knee. Before an x-ray I took a pregnancy test, standard procedure for women of child bearing age.     At urgent care I sent my husband this text:   "Are you sitting down?"  his response was, "No your not".  The Doctor was appalled that I would send my husband a text about being pregnant. The doctor and nurse had a discussion about whether or not we would hear a heart beat. That heart beat filled the room and me with tears.

Two years ago on the 11th of July, I found out that not only was I pregnant but I was 4 months along and it was a girl. 5 months to complete a 9 month project didn't seem enough.

Two years ago on the Twelfth of July, (her birthday) we told Mikaela she wouldn't be getting a dog,  There was an on going bet that, I would be pregnant again before Stephanie and Charlie would be pregnant.  She would get a dog from them or babysit for free.  Stephanie was pregnant at the time, and not telling anyone but family. Our baby was due in December, theirs in March thus putting my pregnancy ahead of hers. Charlie was thrilled, I just saved him a lot of cash.

Little did I know that those few days would change my life completely. A month later Mike and I would be laid off from our jobs.  I would be placed on state insurance and  God would be with us on our next adventure.

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. ¹² Then you will call on me and come and pray to me, and I will listen to you. ¹³ You will seek me and find me when you seek me with all your heart. ¹⁴ I will be found by you,” declares the Lord, “and will bring you back from captivity   Jeremiah 29:11-14