Thanksgiving Weekend

Thanksgiving weekend was very busy for us this year.  My grandparents were unable to make it out, and they were missed.  We went over to Amanda and Tyler's house for Thanksgiving.  We went out in the canyon and took some family photos--since it will be the last before Cory leaves on his mission.  Then we had Thanksgiving dinner and spent the afternoon relaxing and looking at ads for Black Friday.

Kai did really well.  He was fussy when we first got there, but once we went downstairs and put him in the mini-crib Amanda and Tyler had set up, then he went right to sleep.  He slept nearly the entire afternoon, which was really nice.  Zuri ran around with her cousins and had lots of fun.  She even ate like a champ--if only she would do that every day!

Kai with his great-grandmother--he was mid-blink so he looks sleepy.


I had set Kai down on his back and went to get a blanket.  He rolled to his side and was asleep before I turned back around.

Friday was spent Black Friday shopping.  Oh yes, I braved the crowds, but I didn't get up super early to do so.  The crowds really weren't that bad, and I was able to get some really good deals.  I spent the morning shopping on my own and then met up with Josh's mom and sisters for the rest of the afternoon.

Saturday morning was spent finishing up shopping, then I worked on my talk (I gave a talk on gratitude at church today).  Once Zuri woke up from her nap, we did some Christmas decorating and got our tree up.  We don't have a tree topper yet, so the tree is not completely finished.  Zuri absolutely loved decorating the tree.  She has been enamored with Christmas trees ever since they started showing up in the stores at the end of October.   She kept saying, "oh so pretty!" every time she put an ornament on the tree. 

1st Haircut

Kai had his first haircut!  His hair was getting way too long and scraggly to ignore any longer, so we finally took him in and got his haircut.  He looks like a little boy now!  Kai really didn't like having his haircut, but with daddy holding him he did pretty well.

Overcoming Fear

For as long as I can remember, we have had this porcelain doll sleeping on the moon hanging on Zuri's mirror in her room.  Zuri hasn't really paid much attention to it, except lately, where she has started to become increasingly afraid of it.  I am not sure why she has become afraid, but it has gotten to the point where she will skirt around her dresser to avoid the doll, and even make me take her out of her room.  She wouldn't touch it even with me holding it and her.  Finally, today I took the doll down and I have been getting her "acclimated" to it.  After some time, I was able to get her to hold it and now she is telling me how nice the doll is and that it is not scary.
Hooray for overcoming fears! 

Six Months

 
The last two weeks have been rough.  Not only have we had the emergency room visit, but we have had a ton going on and appointments galore.  Kai has had three other incidents of respiratory distress, but they have been more mild and manageable than that first one.  I have had to do two emergency trach replacements--one by myself.  That was very nerve-wracking but went off without a hitch.

Kai also celebrated his six-month birthday.  Hooray!  Six month stats:  weight is 11 pounds 12 ounces, and he is 24 inches long.  He is in the 1% for height, weight and head circumference.  He still needs head support, and he can roll from one side to another, but he does so only sporadically.  He absolutely loves his fingers.  He will chomp on his fingers all day long, but still refuses a pacifier.  His OT said that he is probably too old now and will never take to the pacifier, but sucking on his fingers is a good sign.  

At his six month check-up, his pediatrician was impressed with his overall growth.  He did have concern over his head, however.  His soft spot is almost completely gone, but his head is slightly misshapen, and not in the cosmetically unpleasing way.  What that could mean in the long term is uneven growth, and even restricted brain growth.  He has recommended that we see a surgeon at Primary Childrens.  What they would do is break his skull and get it reformed.  To say that I am apprehensive about doing something so severe is an understatement.

The CCV Trach Clinic went well.  He saw six different specialists and they were full of praise at how well Kai is doing.  There was no mention of him going back on a ventilator or needing any sort of ventilator support.  Each specialist made a comment about how well I was doing with Kai and how good he is looking.  It was very refreshing to hear positive feedback and to know that my hard work has been paying off. 

We also had an appointment with the Geneticist this last week (why they didn't piggyback onto the CCV Trach Clinic, I don't know).  I left feeling extremely frustrated and angry with the way I was treated.  I am going to rant for just a second.  I understand that doctors are busy and their time is valuable, but so am I, and so is my time.  I make an effort to make it to my appointments on time, and with two children and all the crap I have to do with Kai it is extremely difficult.  It takes three times as long with Kai as it would a normal healthy child.  I just ask that my time is respected as well.  There is a reason an appointment is made.

Now, let me backtrack a bit.  I get to my appointment and we wait for about ten to fifteen minutes in the waiting room.  No big deal.  We go in, and Kai's height, weight, head circumference, and blood pressure are taken (same with every appointment we go).  Then we wait another ten to fifteen minutes. The genetics team comes in and we talk with them.  I will get to what they said in a moment.  After that, they say they are going to bring in the lead doctor (head of the genetics team)--what, my appointment is not over?  Okay...back to waiting.  Over forty-five minutes later the doctor comes in.  By this time Zuri has been telling me she needs to go potty and that she is hungry.  Kai has missed an entire feeding, and I am seething.  I had literally gotten the kids all put together and had put my hand on the door to leave when the doctor walked in and reiterated exactly what the genetics team had told me!  He saw that I was upset and had the gall to suggest that I needed a case manager to help with all my appointments.  I managed to keep my cool and be polite, but I wanted to say, "I am just fine making it to my appointments.  I don't need a case manager, I just need doctors to respect my time and show up."  Then he tells me that we could have met at the Riverton Clinic (which would save me over 30 minutes of drive time plus the gas)!  We have tried to get all our appointments moved to the Riverton clinic but they wouldn't cooperate!  It is just like with the pulmonology when the doctor told me he wanted to see Kai again in October, but when I called to make an appointment, they said nothing is available until December.  By the time I got home from the genetics appointment Kai had missed two feedings.  The worst part about it all is that it could have easily been done over the phone.

The whole escapade with the genetics appointment wouldn't have been so bad if it weren't a reoccurring theme.  Just the day before I had gone to an appointment that should have taken 30 minutes tops, but we were there for over two hours.  In fact, the office had closed down and locked its doors for lunch and was about to reopen for business when I left.  Ridiculous!

As for what the geneticists had to say:  they confirmed the diagnosis of Marshall Smith Syndrome.  They said that J, Zuri and I aren't carriers.  They said that it is a gene mutation that is dominant, so basically, if you have the mutation, you show it--hence Kai.  There is less than 1% chance that we could have another child with the mutation.  They said they can't say 0% because there is always a slight chance but the odds are even greater that we won't now that we have had one child with it (considering less than 50 people worldwide have had this syndrome in the last 40 years, you get the odds).

In a sense it is a relief to hear the news.  There is always something lurking in the back of my mind that wonders if something I did (or didn't) do caused this to happen to my sweet little boy.  There is nothing I can do about a gene mutation.  It happens naturally--part of life.  It is so hard to watch when pregnant women do things that could potentially harm their baby.  I tried to do everything I could so that my baby was healthy.  When my blood sugar came out a bit high, I stopped eating sugar.  Even when I was told I could eat sugar, I still abstained.  I see so many pregnant women doing unhealthy and even risky things and a part of me just cries out at the unfairness of it all.  They aren't taking care of themselves or the baby, why do they get healthy babies?

The other day I was grocery shopping and a woman walked by with a three or four month old.  The mom and the baby were cooing to each other.  I cried.  It seems such a little thing that people take for granted.  I will never hear Kai coo.  He doesn't even look at me and smile.  He doesn't reach for toys.  

I have talked with several specialists about his lack of smiling and head support.  None seem concerned.  They just say that with the trach and his head being so big that it will take longer for head support to come.  They don't want to "limit" him by his syndrome, but we also have to take it into account.  Will he be able to have head support?  Some do, some don't.  We don't know.  Will he smile?  The other children all seem to, so the answer is...yes?  Kai is more on the severe side of the spectrum as far as things go, so really, we don't know anything.

I digress, however.  I didn't intend this post to be melancholy; as I mentioned earlier, it has been a rough couple of weeks.  I am looking forward to Thanksgiving, however, and seeing family.  If the weather remains nice, my grandparents will come out from Sacramento and spend Thanksgiving with us.  We will all go over to Amanda and Tyler's house (providing Amanda hasn't had her baby) and enjoy.  It will be the last family get together before J's brother leaves for his mission to Atlanta.  It will also be the first family function which Kai gets to attend.  Here is hoping all goes well!

Veteran's Day

What a Day!

Today did not go at all as expected.  It started out pretty normally, with J going off to work, but it all went haywire just after nine.  Zuri's new favorite thing is the bath, and since it keeps her occupied for a time (that kid is full of energy), I thought it would be a good time to get some bills done while she was playing in the bath.  I had just gotten Kai's food going and he was sleeping, so I thought all was well as I sat down and started working on the bills for this month.

Shortly after I began, Kai started coughing, to which I immediately rose and went to his crib.  Coughing is often his precursor to spitting-up.  Suddenly, he started flailing around and turning purple.  I couldn't understand what was distressing him so, so I checked his diaper to see if he had pooped (his yeast infection is still really bad and when he poops it hurts him badly).  He hadn't.  Then I saw his formula shooting out of his stomach and the g-tube connector on the mattress next to him.  I couldn't understand how it had come off, but I quickly paused the pump and tried to put the connector back in, only it wouldn't go into the g-tube.  I tried to close the button but it kept popping open, spraying more of his stomach contents.  Somehow, a piece of the connector had come off.

Unfortunately, that wasn't my main concern.  I needed to get him calm and breathing, but he wasn't responding to anything.  Finally, in a panic, I flew over to my neighbor's and banged on their door.  My wonderful neighbor came right over.  Meanwhile, Zuri had gotten out of the tub and was running naked all over the place, not understanding that something big was going on.  My neighbor (whose husband works at home and she has two kids of her own) took Zuri over to her place and was kind enough to drive us over to the emergency room.  I was in such a panic that I couldn't find my keys, which ended up being in my purse.

By the time we reached the emergency room, Kai had calmed down and although still pale, not in the dire state he had been in ten minutes before.  He had even fallen asleep in the car.  We were seen right away at the ER at UVRMC, which is where J told me to go since they "know" about g-tubes, and are equipped to handle them .  Apparently, not the ER staff, because I had to explain several times what the problem was, and what we needed to do to fix it.  When the doctor came, I even explained step-by-step how to remove the old g-tube and insert the new one (which I had in one of the many bags I have to carry around and they had to use ours because they didn't have one).

Don't get me wrong, the doctor was very competent and he and the staff were all very nice and friendly.  In fact, I would definitely go the extra ten minutes there instead of Timpanogos, it is just that I could have replaced Kai's button at home and saved the ER trip (and money) if I had realized that I would be explaining to them how to do the procedure.  In fact, I had started to do it at home, but Kai had calmed down enough that I figured it would be best to do it at the hospital (which is what is recommended if possible).  It is just hard to realize that when it comes to emergencies with my son, I am often more knowledgeable than many of those who are supposed to treat him.  It is a scary prospect.

During our trach classes at Primary Childrens, the respiratory therapist said that when we get home we should call the local fire department and let them know we have an infant with a trach.  So, we did just that.  Their response?  "Well, you will be there in an emergency, right?"  Basically, they don't have the training to handle our son either.  Wow.  Just wow.
   Kai fell asleep in my arms just before the doctor came in and was asleep during the whole changing of the button.  I found some humor in the situation and thought this sprawled out look was funny.

I know that taking Kai to the ER was probably the best thing to do, but afterwards I felt as though I had over-reacted.  I still don't know why he went into respiratory distress, but if he hadn't, I definitely wouldn't have taken him.  I panicked.  Even on car rides (which he has been doing better with), I only have to pull him out of the car seat and hold him to have him calm down.  I have never seen Kai in such a state of panic--he was purple, wild-eyed, thrashing, soundlessly screaming, and sweating.  He wasn't junky either (trach speak for having a lot of mucous and needing to be suctioned), which makes it all the stranger.  His mask was on and covering his trach, the oxygen was set to the right level (I even increased his oxygen a little to get him breathing).  The part of the button that came off should not have effected him (especially his respiratory) so it remains a mystery.

Kai is quick to rebound, however, and by the time we got home, he was in a good mood, sucking on his finger and making farting noises (I think of it as his way of cooing).  The OT came about ten minutes after we got home.  Even though he had had an eventful morning, since he was in a good mood, she decided to try tasting some baby food!  Kai had his first baby food today and he did really well!  The big worry about food with a trach is aspiration.  Kai handled it all like a pro.  He really didn't seem to care about the food one way or another.  The OT said that it is really hard for him to taste it, that it is like eating with a stuffed nose.  You can tell the different texture and a tiny bit of taste.  We didn't even need to suction him after he had the food, which means that he swallowed it into his tummy and not into his lungs (which is common for kids with trachs). 
  After tasting the food.  Total look of indifference on his face.

After the scare of the morning, the rest of the day went fairly smoothly.  We have a long day coming up on Wednesday where we will spend the day at Primary Childrens.  It is for a trach clinic.  Basically, a day for all the specialists to see Kai and assess how he is doing.  It is nice because it takes care of several appointments in one sitting, but it is hard because it is literally all day.  Hopefully all will go well!

Flashback

Last night the nurse who came was the first nurse Kai had when he came home from the NICU at Primary Children's Hospital.  She hadn't seen him since that first night and she was completely amazed by how big Kai has become and how much he moves now.  Since I am with Kai every day, I don't see the changes as much as others, and I often forget how small and hypotonic he was when we first brought him home.
Then today I ran across this video from when Kai was in the NICU.  I had meant to post it way back then, but kept forgetting.  It was about a week before we were able to bring him home, while we were doing the trach mask trials.

I remember the little bit of movement that he was doing while I held him was so encouraging for us, because he would normally lie so completely still while on the ventilator.  With the trach mask he had more freedom to move and he took advantage of it.  I still remember how he showed his stubborn personality even then, by continually kicking out his foot from the swaddle they had him in to keep him warm.  He has come a long way in the few months he has been home.  We brought him home at less than five pounds.  We are so grateful for this little boy in our lives.

Halloween Weekend

 
Halloween this year was a weekend of fun.  My mom made a princess costume for Zuri, which she absolutely loved.  She kept saying "oh so pretty!" to the dress and twirling around.  We didn't have the hat done for the trunk-or-treat on Saturday, but it was ready for trick-or-treating Monday.  Zuri loved the hat for a short time, but was done before we actually made it out the door Monday night.  I don't think she liked the strap that held the hat on her, although she has been wearing the hat most of the morning today. 

Saturday, we went to my mom's house for trunk-or-treating out at the local firestation.  They had a chili cook-off and had a bubble show for the kids.  They did a really neat bubble trick with propane, a kazoo, bubbles, and a lighter. 

Zuri had fun at the trunk-or-treat.  She really started getting into it by the end.  She was only afraid of the people who wore masks.


She ran around with McKenzie, who was a witch this year.


She also had fun with Dallas.


Sunday, we carved pumpkins and made caramel apples.  Zuri has been so funny this Halloween; finally understanding the concept of "scary," everything scares her.  Even pumpkins.  We have to tell her that the pumpkins are "nice" and it is a "nice witch," or a "nice ghost."  She did better when we were carving the pumpkin though, and didn't think it was scary at all. 





On Halloween, Zuri actually went trick-or-treating twice.  I took her to the mall at six.  By the time we got back, J was home from work, so he took her out trick-or-treating around our complex.  We did not receive any trick-or-treaters!  Our neighbors hadn't had many either, which really surprises me.  I guess it is just in the areas with houses that trick-or-treaters are more likely to be.

Zuri really got into the spirit of trick-or-treating Monday.  She would run up and say "trick-or-treat!"  If someone allowed her to pick her candy, she would grab a huge handful.  So funny, especially since Zuri really doesn't like candy all that much.  She loves dum-dums, but other than that, she really doesn't eat candy.


Looking for her prince....

Lastly, we got some pictures of Zuri and Kai.  Even though we didn't take Kai out, we still got him all dressed up!

Love this look on his face....Mom, why are you taking my picture...again?

Just before we went out trick-or-treating!

I couldn't get a really good picture of the two of them together.  Kai was really hot in his costume and was fussy, so unfortunately he didn't stay in it very long.

It is fun to watch as Zuri grows and now is able to understand and enjoy holidays.  I am looking forward to Thanksgiving and Christmas.  There is something about seeing Holidays through the eyes of your children that just makes something fresh and revitalized.

In other news, we just received word today that we were approved for another term of nursing (a term is 60-day increments)!  We will have nursing until December 25th, when we have to reapply again.   We are so relieved!  I can't tell you how grateful I am when the nurse gets here and I can get some sleep!  Especially since J doesn't come home two days of the week.  Thank you all for your support and prayers!

Happy Halloween--hope yours was fun and candy-filled!