A Good Time

Kai with his Grandma

We had lots of visitors this weekend.  On Friday, J's mom and sister came up and spent some time with us.  On Saturday, one of J's aunts came over along with a few of his cousins.  We had a great time visiting and Kai loved all the attention.  It was really nice to have family over this weekend--a lot of the time we feel removed from everyone because we can't really go anywhere.  

In fact, I think Kai was in such a good mood that later in the evening after every one left, he laughed for us!  J was tickling and playing with him and he opened his mouth and I swear he was laughing!  I had never seen that look on his face before! I tried to get a picture of it, but the flash kept bugging him and he would stop.  We haven't been able to get him to laugh again, but we are hopeful that this is just the beginning!

       It looks as though Kai is giving Marci a smile!

My sister is in from California and will be staying with us for a couple of weeks.  She will be moving to Japan for a year (or more) to teach English on March 14th.  We are really enjoying having her here, but I think Zuri is having the most fun with her.  Zuri won't leave her aunt alone--completely ignoring J and me.  In fact, any attempts I make to play with her are completely ignored in favor of "Emmy."

       Here she was covering Emily with a blanket and anytime Emily would poke her head out Zuri would cover it.  I was able to get her to stop long enough for a picture, and Emily to get a sneak peek out!

In other news, we were not approved for the ten hours of night nursing.  We were less than six points away from making the cut, and since we have managed with eight hours the last two months with the ventilator, they said that we don't need the ten hours.  Needless to say, we are disappointed, but still way excited for the respite hours to begin in March.  

Since Kai has grown out of his car seat, we went out and got him a new one.  He loves it and looks great in it!  We have been using it as a chair inside until we can find something that will work.  Kai still needs head support and a reclined position but has grown out of all the infant items.  Our OT gave us some ideas of what we can get for him, so that will be our project this weekend--finding a good seat for Kai.  :-)

Development

This week we had our IFSP (Individualized Family Service Plan) for Kai.  Overall, he is at a three month old level in his development--he is at a four month developmental age for social-emotional and two month developmental age for expressive language.  All other areas he is at a three month developmental age level.  I was not surprised by the results at all--it was exactly where I had thought Kai to be.  He has more alertness and self-awareness than a newborn, but not much.  With the trach/vent, he is unable to make sounds, and with his hearing loss, he is unable to hear much--which is why is is slightly lower on the expressive language end.

We set up goals for the next six months--sadly, they were all pretty much the same goals as when we started six months ago.  Still, I am hopeful for some progress.  For the last couple of weeks we have seen Kai make an effort to not only lift his head, but also to exert some form of control (the head bobbing you often see with a two-three month old).  It only lasts a few seconds at a time, but he is making the effort, which is really exciting.



Have I ever mentioned that my favorite time with Kai is bath time?  I absolutely love giving him baths for a couple reasons.  One, because he loves his baths.  He doesn't splash around or anything, but he will blow bubbles and suck on his fingers.  His favorite part is getting his hair washed.  He will look up at me with his happy eyes and blow bubbles.  Most infants/children only need a bath a few times a week, but Kai needs one every day.  He drools and sweats so much that by the end of a 24 hour period he can get quite stinky and gross.  Combine that with trach and g-tube secretions and it is just easier to give him a bath every day.  I don't mind, I love it!

After his bath I will do his trach and g-tube cares, change out his bedding, clean off his pulse/oxygen sensor, and get fresh clothes on him.  All said and done, the whole process takes an hour (that includes disconnecting and reconnecting the vent circuit from/to the humidifier and the concentrator--oxygen to the portable oxygen).  Kai loves to be clean.  He is always so much happier after a bath. 

To make bath time a little bit easier, Kai's OT got us a new bath chair for him.  He loves it.  He has grown out of his old bath chair (he is too big for the infant baths), so we are very happy to have one that fits! 


Trying out his new bath chair!  When dry it can double as a sitting chair, which is another thing we need.  He has outgrown his bouncer and swing as well! 

Earlier this evening I had just completed CPT (chest compression therapy) and range of motion exercises with Kai, and he was sitting on my lap just making the cutest raspberry noises with his fingers in his mouth.  I got to thinking about how grateful I am that we never gave up on him as so many doctors had in the beginning.  I am grateful to see him as he is today--alert and happy.  

He is starting to recognize when we are near and kick his legs out to show he is excited to see us.  He will lift his head to see us better and blow raspberries with his lips. He is getting used to his eye, although he still works to get it open.  When he is in an especially good mood, you can see the corners of his eye (where the eyelids weren't sewn closed).  He will often look toward the left with his right eye as if to compensate for not being able to see anything out of his left. 

It is remarkable to see the change in him and how much he has grown.  I am grateful for the time we have been given with him and hope for many more memories to come.   

9 Months

Nine month stats:  weight: 18 lbs 14.8 oz--23rd percentile.  He is in the 7th percentile for height and 27th percentile for head circumference.  Most MSS children don't grow very tall, so it is not surprising he is shorter.  In November he was 1% for height, weight and head circumference--he has come a long way in just a few months.  He had a huge growth spurt after coming home from the hospital in January.  Whether it was due to the change in formula or the addition of the ventilator, we are not sure.  It is probably due to both.

We also received the results from his latest blood gast: 47.  That is the best his CO2 levels have been!  They are keeping his ventilator settings the same for now.  I also made the appointment for his next CT scan--and I was wrong, they will have to put him under anesthesia for the scan.  I always worry when he is put under, even though he hasn't had any adverse reactions yet.  

Also in the disappointing news department, we found out that Kai will most likely not qualify for ten hours of nursing at night--he (most likely) just isn't high enough on the grid score.  I was looking forward to a solid eight hours of sleep.  As it is, I am lucky to get in six hours on days when J doesn't come home.  When the nurse gets here, we have to fill her in on what is going on with Kai.  Sometimes it is quick, other times it takes longer.  Then I have to get ready for bed, unwind, and do anything that I was unable to do during the day (ie out of sight of Kai).  Usually by the time I actually make it into bed, an hour has passed.  Then in the morning, I have to get up early enough to take a shower (or forgo a shower until J gets home that evening--and trust me, that has happened many a time in the interest of getting just a little more sleep) and get ready before the nurse leaves.  Another hour down.  That leaves six actual sleeping hours (provided Zuri doesn't wake up during the night or the nurse doesn't wake me for some reason and I fall asleep right away).  By the time the weekend comes, I am exhausted, and J usually lets me sleep in so I can catch up on sleep.  There have been a couple of times that I have slept until almost noon!  Needless to say, I was really looking forward to the ten hours.  We will know for certain in the next week or so.  

For some good news, we are all set to begin our respite hours beginning in March!  We have March's hours planned out and have a weekend getaway with just J and me!  I am so excited!

Additionally, we finally got our disabled plates for Kai.  I know, it seems like we should have done that long ago, and that is true, but we haven't had the opportunity.  We dropped off the paperwork at Kai's doctors office forever ago but haven't had the chance to pick it up and then get it to the DMV.   At the trach/vent clinic, Dr. M filled out the paperwork and handed it right to me, and yesterday I was able to make it over to the DMV.  Little things can make life just a wee bit easier!

Emotional Fire

Beautiful Lake Tahoe.  This picture was taken across the street from my dad's house.

As mentioned in the previous post, the weekend was full of emotions.  I was originally going to do one long post but felt two would be better.  The drive from our place to Lake Tahoe is almost ten hours.  I had lots of time to think during the drive since I went by myself.  J stayed home with Zuri and Kai during the three days I was gone.  J was able to rearrange some appointments and clients at work so I could leave Thursday.  We had had a full weekend planned but we were able to reschedule most appointments so that I could go.

One appointment we did keep was the one regarding the respite hours.  J put me on speakerphone so that I could participate.  Good thing, because when she first got here, she was set on giving us 30 extra respite hours, but after finding out about our situation she gave us 50 respite hours a month (which I am fairly certain is the maximum allowed)!  The clincher was when I told her that J doesn't come home twice a week and the nights he does come home it is around nine.  She also told us that we should be receiving ten hours a night instead of the eight we currently have with Kai being newly on a ventilator.  We have already made an appointment with our nursing program to get those additional two hours a night (which are separate from the respite hours).

When we officially got the approval for the respite hours, I literally cried.  I feel like I am getting some semblance of a life back.  I will be able to go grocery shopping.  Date night with J.  We can put Zuri in a dance class.  I will have someone to come with me to appointments so I don't have to do it alone--no more frantically pulling over to the side of the freeway to fix whatever is wrong with Kai's ventilator.  We can go to family functions together....

I cannot even express how liberating it feels knowing that we have the respite hours.  J has been busy planning our weekend getaway together.  We have not seen each other for more than a couple waking hours at a time in almost three weeks. 

That was the good news, which we received just a couple hours before the funeral.  Then, just before the funeral was about to start, I got a phone call with some bad news.  The geneticist called me and wondered if I have heard from Dr. W (the neurosurgeon) on the results of Kai's MRI/CT scan.  I told her no, I haven't heard anything yet.  She said that I will hear from him soon, he said he was going to call, and I will have to get more information from him, but that they had gone over the results and there was abnormal findings on Kai's spine.  She said that the cervical spine is much narrower than it should be and also not as compressed as it should be.  She said that could effect everything from movement and joint pain to breathing.  They want to schedule another CT scan (at least he won't have to be put under anesthesia again) to look a little more thoroughly and be certain, but if things are as bad as they think, the course of action would be spinal surgery.  I tried to ask more questions, but she didn't know the answers--I need to talk with Dr. W for more information (she works under Dr. V who is our main geneticist). 

Receiving the news was heartbreaking.  How much more can our little guy go through?  When does the cost outweigh the benefit?  I don't have all the details, and the surgery may not even be necessary, but the fact that it was mentioned brings us back to the same argument: how much is too much?  Will it improve his quality of life?  Is it really necessary--will it make a difference, or will we be putting him through unnecessary pain?  Kai's syndrome is so rare and he falls on the more severe end--we are in uncharted territory here.  We just don't know so much.

The weekend wasn't all emotional, and ended on a pretty good note.  I was able to spend time with another one of my best friends, Jaimie, for a short time Saturday night.  She has been amazing over the last year.  Her love and support has helped me through some rough patches.  Sometimes it hasn't been much other than a text or a message that just lets me know that she is thinking of me or wants to know how I am doing.  Just a small gesture that really means so much.

I was also able to spend time with Dad and Emily, which was a lot of fun.  It has been a long time since the three of us have been able to spend time together like that.  Although I was ready to leave Tahoe and get back to J and the kids, it was also a little hard leaving.  It would have been really nice if J and Zuri would have been able to come out with me (there is no way it would have worked with Kai).  Luckily, our next trip will be in May for Shin and Heather's wedding, and we are planning on (hopefully) going out for the 4th of July this year.  With the respite hours, we will be able to resume our tradition!

Today also marks Kai's nine month birthday.  Hooray!

Cheryllyn

The weekend was filled with emotions.  On Wednesday I learned that my best friend, Chantal's mother passed away unexpectedly, and by Thursday afternoon I was on my way to my home town of Lake Tahoe, California to support and help any way I could.  Unfortunately, this was the second tragic loss the family had encountered in the last 11 months; Chantal's grandpa passed away last March due to an automobile accident.  

Chantal's mother (Cheryllyn) and I were not close, however, I do have some fond memories of her.  One that Chantal and I like to reminisce about is the first time I went over to Chantal's house in ninth grade.  Chantal's family had just moved to Tahoe and they were still in the process of unpacking.  Chantal and I had gotten into a water fight and we thought that we had been so clever in cleaning up all the evidence (and missing all the boxes) but when Cheryllyn came home she went into the bathroom and discovered a place we hadn't thought to check.  We heard her call out "who peed on the toilet seat!"  We couldn't stop laughing...um, that's not pee!

Cheryllyn also loved to be "one of the girls."  She loved to join in on slumber parties and always had a funny story to tell.  She relished telling the story about Chantal's first experience seeing a bear in Tahoe.  She would keep you entertained with her dramatic re-enactment of stories. 

Unfortunately, the last time I saw her was three years ago when she spent some time with us for the 4th of July.  Her passing has been especially hard because it was so unexpected and no one had a chance to say goodbye.  She was full of zest and life and will be missed.

Back Under

Life with us is never dull.  Today we spent at Primary Childrens, and poor Kai had to be put back under anesthesia for an MRI to check up on his hydrocephalus and a few other things.  He also had a CT scan done beforehand and I got to be in the room for that one!  I even got a picture (the people at the hospital must think I am crazy because I am constantly pulling out my camera).  Kai was a trooper during the CT scan.  He just looked around and was completely content.  


After the CT scan and the MRI (to which we didn't find out the results as of yet--hopefully soon), Kai had trach/vent clinic, which consists of us staying in a room while four or five specialists (ie pulonmonlolgy, respiratory, genetics, etc) come to see how Kai is doing.  I have to tell you, trach/vent clinic is the best thing ever.  Trach/vent clinic takes care of the need to see all the specialists in one visit instead of having to have all the separate appointments (and the struggle to get Kai out of the house).

As for today's trach/vent clinic, all went well.  They said that Kai seems to be doing great, and no changes to his vent settings (yet).  The put the CO2 monitor on him and his carbon dioxide levels were in the 40's and 50's.  SO much better than they were even when he was discharged from the hospital in January, but even still, they took a blood gast (poor guy, another poke) to verify.

Kai is now over 18 pounds!  He has done some amazing growth this last month.  Whether it is because of the vent (and not having to work so hard to breathe) or the change in formula, or both, he has gotten so much bigger!  He is now at 22% on the growth charts and 98% of where he should be--meaning he is right on track, which is fantastic!  The RT was so funny when she saw him because she was so excited about his baby fat rolls!

The pediatrician talked about *gasp* wheelchairs.  Okay, that has been a hard one to wrap my head around.  Our OT brought up the dreaded word a couple months ago and we completely dismissed it.  Kai is still too young to consider it, right?  After all, our stroller is (was) working just fine.  She was completely amazed that we have been able to make it work with a regular stroller thus far.  In fact, she said that we can get an "adjusted" stroller that has room for all his equipment, including his vent and oxygen.  YAY!  Then she started talking wheelchairs.  Here's the kicker: insurance will only pay for one adjusted stroller OR wheelchair every five years.  Ah stink.  So, we need to think long-term; what would be most beneficial for Kai.  Surprisingly, the answer may not be the dreaded wheelchair (hooray).  The doctor said that with Kai needing the head support and reclining position that he requires, an adjusted stroller would be less bulky and easier than a wheelchair with the same features.  Sweet.  I don't know why, but getting a wheelchair in essence makes it feel as though we are giving up on him being able to walk, and trust me, we aren't.  We have an appointment set up in March to check out all our options and choose the right fit for our family.

In other potentially good news: our number is up!  When Kai came home on the trach we were put on a waiting list for a program that would give us additional nursing (respite) hours.  When Kai was put on the ventilator, we were "bumped" up on the list, but were told it could still be a year or more before we could actually receive those additional hours.  On Monday, I spoke to the Coordinator of our nursing and asked more about how to get the additional respite hours and she gave me some information.  Kai had a follow-up eye appointment so I didn't have a chance to call the number she gave me, but it didn't matter because I got a call from them!  She wants to meet with us Friday to talk about a possible 30-40 more respite hours a month (starting later this month or in March)!  We are dancing in the clouds.  Date night!  Family events together...someone to help me when I go to appointments...being able to go grocery shopping...an extra hour of sleep...a weekend away...all now possibilities if we get the hours.

It is amazing how much something as simple as going to the grocery store is appreciated when you are unable to get out and do it.  Additionally, it isn't simply a matter of "when J gets home I can go" because he doesn't come home two nights a week and on the other two days that he works that he does come home, he doesn't get home until after eight.

We are praying that we get those additional hours!  Just the thought of having the additional nursing has raised our spirits so much.  We love our little guy to pieces, but we definitely need breaks to help recharge our batteries!
  I finally got a picture without his fingers in his mouth!  I had him sitting in his stroller and he was intently looking out the window as I folded laundry.  He was chomping on his fingers and I got some great shots of that as well, but he lowered his hands for a second and I was able to capture the moment!

Little Miss Zuri

I know the posts have been very Jeremy oriented the last few months so I wanted to write a quick post on how Little Miss Z is doing.  She is full of spunk and life.  She is a little bundle full of energy.  She also gave her first talk in Primary on Sunday!  She spoke on Noah and how he was blessed by following God's commandments.  She was fabulous!  No stage fright; she was very articulate and enunciated her words well.  She loved all the praise she received afterward.  She thrives with positive feedback.  She is very much in the 3 year old silly mode these days.  Everything is silly, and she loves to say "Mommy, look!  I made a silly face!"  She is my cute Little Miss.