Yea....it's kinda like that

Welcome to Holland

by

Emily Perl Kingsley 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy new guide books. And you just learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while you catch your breath, you look around....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland. 

Home

Well if the past two days weren’t a test of patience and perseverance, I don’t know what would be! Here are the basics, 30 hours at the hospital for a 24 hour test where T was required to have constant supervision and minimal movement. He’s one and a half…you can just imagine how much fun that was! But this isn’t a post about the hospital, or the test, or the incredible family support throughout the whole thing (although all those things are certainly noteworthy) this is a post about being home.

When we left the hospital T and I were both exhausted. On the way home, he kept dozing off and just looked completely out of it. The second we walked through that door though..complete 180. He got the biggest, goofiest grin on his face and practically jumped out of my arms to get to his toys! He went into every room and couldn’t stop rolling around on the floor and scooting from place to place. The look on his face was pure joy and his energy was intoxicating. We played and read a few books then he fell asleep with me on the couch for a good four hours and when we woke up it’s like we hadn’t even been gone. We instinctively fell right back into our dinner, after dinner, and bed time routines.

The funny thing about T is he is completely contagious; when he’s grumpy or uncomfortable, I find myself very irritable but when he’s happy, I’m so happy! He has such a sweet spirit and there was nothing better than the smile on his face when he got to go to bed in his bed tonight. Sometimes we forget about those little things and I find these reminders to be a huge blessing.

Backspace Sunday

It's one of those writing moments; I'm sitting at my laptop trying to think of something intelligent and deep to share with the world and all I've been able to come up with so far are a couple cliche lines about how sometimes only time can heal and how we are all flawed. Real deep, I know. I type out a couple sentences but none of it is really what I want to say so I hold down that backspace button until I'm left with an empty canvas again.

I guess all I really want to say is, I'm happy. My sweet boy is playing with his reflection in the mirror, my house is clean, and my new Pandora play list is totally bad ass. In the midst of all the chaos Titus and I have created this little sanctuary for ourselves where there is peace and comfort and hope. Titus hasn't stopped smiling all week and its completely addicting and contagious! Hes been sleeping well and has not stopped moving even for a minute. It's as if with every scoot, every coo, every smile, every touch he's saying, 'It's ok mom, we're strong, I'm strong, and we'll be ok.' I am so blessed to be this little boy's mommy. I've said it before but until recently I never realized what a precious gift Heavenly Father was trusting me with. He's my sweet boy and I'm absolutely thrilled to see all that he will accomplish and who he will become. 

Sweet Smiles

Had such a fun weekend with my sweet boy! We ran errands with Papa yesterday, brave little man had his blood drawn again, and we ended the night at aunt Cole's graduation party. Then we went to grandma and grandpa Woods' house for breakfast this morning with aunt Cole, uncle Joe-Joe, and uncle Bug and after that we went to the 8th street market to soak up some sunshine. This poor boy has been so sick over the past couple months and finally started feeling better earlier this week; it's so nice to see his sweet smile again and to hear him laugh and see him play! Hopefully we're on the up now.
Happy blogging!

Spring Time

I feel like most my posts start out with the same line; it's been another busy month. And boy it certainly has. Titus is doing great; I see improvement each and every day and his newest little venture is eating solid foods. He likes bananas and cheese and absolutely loves graham crackers! He's also very interested in feeding himself with his spoon, needless to say every night has turned into bath night. He is seeing two occupation therapists, one to help with development; eating, learning, problem solving, the other to help  with physical things; 

sitting, crawling, walking. They usually alternate every other week, so he gets to see one of them every Friday afternoon. They come to our house which is so nice and usually spend about 45 minutes with him. He's always exhausted after but he also tries to keep going and try some of the exercises without any help, it's fun to see. He's become so much more aware over the past couple of months, he laughs more and engages with people. He smiles whenever he sees a familiar face and looks a little puzzled when he meets someone new, after a couple minutes of deep concentration he usually will lunge for them and smile or turn his back to them and hang on to me ever tighter. It's fun seeing his little personality come through more and more. He definitely has his mommy's attitude!

Other than helping the little man develop and grow, I have also started getting out of the house a lot more. On a typical night I used to come home and just play with Titus until he went to bed, then I would go to bed, we were quite the little hermits and I liked that, but lately I have been trying to be more active. Titus and I have started going on walks every night to the park, around a couple times, then back home.  Or some nights we walk over to papa's house for dinner then uncle bug rides back home with us on his long board. We were able to spend the afternoon with grandma and grandpa Woods last weekend and we have just been spending more time hanging out with friends and family in general. It's nice getting out with the little man, even if it takes up a lot more of my energy.

Well, not much else is new. Hopefully everyone is enjoying the spring weather! Until next time, happy blogging. 

Getting There

Well, we are half way to a full recovery at this point and I think things are finally starting to look up for the little man. He has had a pretty miserable week, he pretty much cries and chokes the entire time he is awake and coughs throughout the night, waking himself up multiple times each night. He's had a really rough time figuring out how to swallow again and has had the worst runny nose. But I have seen a lot of the progress in the past 24 hours. He slept great last night, took a long nap today, and hasn't seemed to be struggling as much with eating. He was all smiles and laughs when I picked him up from day care today and I was happy to see my little boy happy again. Hopefully it just gets better over the next couple weeks and we can move onto the next steps...literal ones! Hope all is well with everyone and you all enjoyed a lovely Valentine's Day. Happy Blogging.

Home At Last

Titus was released from the hospital late Tuesday night and he is doing better with each passing day. I found it slightly funny that last year on January 29th he was released from the NICU and this year on January 29th he was released from the PICU. We had a long chat when we got home, I told him no more ICU visits, he's met his quota and I'm tired of uncomfortable hospital 'beds' and bad food. Hopefully he'll keep that in mind next year! But in all seriousness, I am so happy to be home and feel so blessed that we were finally able to figure out what was holding the little man back and that it was something we could fix somewhat easily. Wednesday was a bit of a rough day but by Thursday night I could tell Titus was feeling much better. He is still a little overzealous and tries to eat too fast which causes him to choke and spit up a little more than normal and I can tell by his cough and cry that his throat is pretty sore but for the most part he is back to my happy little boy. He's playing and laughing again and even sleeping almost all the way through the night again!

I really couldn't have survived the week without my wonderful family. Eric was sweet enough to stay with us those first few nights home which was incredibly helpful and watched Titus for me today so I could go in to work and catch up a bit. Adele has been constantly texting me, asking how Titus is and encouraging me by telling me exactly what I need to hear in those moments when I'm mentally and physically exhausted. And between mom, dad, grandma, Cole, and Joey I was hardly alone at the hospital and never hungry; they each came with gifts of grilled cheese sandwiches, fries, or much needed caffeine! Nichole even came and cleaned my very embarrassing apartment for me this week so I could get a couple hours of sleep.

Thank you for the constant love and prayers and kind words. All the comments, texts, and phone calls meant so much to me and really helped keep my spirits up during this very tiring week. Now we all get to sit back and watch as Titus grows and blossoms! I can't wait to see the little boy he will become over the next few years. I am so blessed that Heavenly Father chose me to be this very special boy's mommy, I really couldn't ask for more. 

Quick Update

Well, it was a bit of a rough night but Eric and I were both here so one of us slept while the other tried to console Titus for a couple hours, then we'd switch. The little man is sleeping now and all three of us are pretty exhausted but the doctor came in this morning with good news, Titus can move out of the PICU and onto the regular pediatric floor. As soon as he wakes up we're going to scoot over there and then see how the day goes. Doctor stopped all heavy pain meds so we're down to Tylenol and Motrin. If he has to take those consistently all day we'll stay in the pediatric unit tonight. If we can cut back a bit and the pain seems to be subsiding we may get to go home tonight. Thanks again for all the prayers! The constant support is greatly appreciated and doesn't go unnoticed. I'll post again tonight. Happy Tuesday!

My Little Trooper

Well my little man is back in the ICU. We came to St. Luke's this morning to hopefully get Titus on track for normal growth and development. After months of specialist visit after specialist visit, Dr. Beck was finally able to pinpoint the main problems, all of which were in his throat and nose. 

(For more detailed info scroll down to the post right below this one)

After

Before

A major part of today's procedure was to open up Titus pharynx as it was abnormally small. To the right is a before and after picture. Can. You. Believe. It?! Look at how tiny that hole was before the surgery today. No wonder the kid sounds so raspy, it's a wonder he was even able to breath.

The surgery went very well and was surprisingly quick. The recovery on the other hand has been a bit of an uphill climb. He was in recovery for about 3 hours longer than expected due to the fact that he was gradually sounding worse and worse and we weren't able to get his breathing under control for a while. His oxygen saturation should be at 90% at the lowest and his was dipping right around 87%. Titus was scheduled to have one oxygen treatment and ended up having one every hour for four hours. Naturally the staff wasn't comfortable sending him anywhere but the Pediatric Intensive Care unit for the night.
So here we are. Titus is doing ok. I can tell he is very uncomfortable and in a bit of pain, but they are staying on top of his meds and those are thankfully relieving him , even if only briefly, and he is usually able to fall asleep for 20 to 30 minutes at a time. It took him quite a while to get up the energy to eat but he seems to be eating normally now and is keeping it all down. He goes in spurts, he'll sound a little better then a little worse. He'll seem comfortable then have a coughing spell but overall he is much improved since recovery this morning. We'll be here tonight and all day tomorrow and may even have to stay tomorrow night but we will see. Even though it's scary and hard being back in the intensive care unit, I know its the best place for Titus to be. He's a trooper and such a brave little boy. Thanks for all the love and prayers! I'll continue to keep you updated.

A Bit of Doctor Talk, If I May

I would like to just start out by saying I know very little about the anatomy of the throat and ears so I may not say everything the way I should and I might not make complete sense in my explanations but I have gathered a lot of information from Google and compiled it with what the doctor said this morning and the paperwork I was sent home with and came up with the following.

After months of questions, multiple specialists, too many appointments to count, and test after test after test I think we've finally had a breakthrough. This morning I took Titus to see Dr. Beck, a nose, ear and throat specialist and after a very informational three hour appointment, I left feeling very overwhelmed. She put a scope down his throat to take a look around and found that the opening in his pharynx is abnormally and alarmingly smaller than it ought to be. She said she was surprised that he was even able to breath let alone eat and swallow.

'The pharynx is the part of the throat situated immediately below the mouth and nasal cavity and above the esophagus and larynx. The pharynx is part of the digestive system and also the respiratory system; it is also important in vocalization.' So says wikipedia (I forgot how to site my sources....obviously!)

Dr. Beck also said that he has stridor (noisy breathing), which 'can be caused by any process that causes airway narrowing. In the infant, stridor usually indicates a congenital disorder (problem that you child is born with).' This obviously goes hand in hand with the narrow opening in his pharynx.

Another issue we addressed at the appointment was the fluid in his ears, behind his ear drums. Doctor said that the fluid is causing him to hear things as though he is under water and is probably the cause for delay in speech and babbling in general. She seemed far more worried about the left ear than the right, which I'm pretty sure is the ear that almost failed the hearing screening in the NICU.

The solution to both: surgery. This Monday. It will be done at the St. Luke's downtown early in the morning. He will of course be sedated and he will spend the day there as well as Monday night and possibly most of the day on Tuesday.

Doctor will be preforming a myringotomy with tubes, which is 'a surgical procedure that makes a small hole in the eardrum through which fluid can be removed from the middle ear. A tube is inserted in the hole, allowing air into the middle ear. This prevents fluid from building up again.' This is seemingly simple, should only take 8 - 10 minutes. Titus may be uncomfortable or even frustrated after the procedure due to the change in middle ear pressure and also the increase in hearing but he should adjust pretty quickly and will be able to hear normally immediately after. 

Doctor will also be preforming a direct laryngoscopy bronchoscopy. She said she will be using a rigid and fiberoptic scope to pass through the mouth and down the throat, at which point she will use a laser to make the opening in the pharynx a bit wider. Then she will pass through the vocal cords. She will be able to see the entire anatomy from there and will be able to assess the right and left lung and will sample secretions and send them off to pathology to evaluate for aspiration and reflux. 

This procedure is much more invasive. Titus will have about a 4 to 6 week recovery time. For the past year he has learned how to swallow and breath in a way that is completely abnormal so the weeks after surgery will be all about learning those things all over again. They will monitor him, specifically his breathing, for at least 24 hours after he gets out of surgery and will keep him longer if things don't seem to be going as smoothly as they would like. We'll be home by Tuesday night, fully loaded with reflex medication, antibiotics, and a nebulizer.

I also forgot to mention that Titus' adenoid is much too big causing it to be very difficult for him to breath through his nose due to excessive mucus production. Doctor will be removing that as well by performing an adenoidectomy. Most of the time the tonsils would be removed at the same time and even though his are slightly bigger than doctor would like them to be she has decided it it best to keep them in there for now because they don't seem to be causing Titus any discomfort or problems.
(The adenoid is highlighted in green.)

The next couple of weeks will hold their challenges but they will also be so rewarding. My sweet boy will be able to hear clearly, he will learn to eat and breath properly and instead of using up extra calories with those two tasks he will be able to put so much more of his energy into growing and learning! He has an occupational, physical, and speech therapist coming out every Friday for the next couple of months to help him learn how to sit, crawl, walk, and talk and I am just thrilled to see everything that Mr. Titus is capable of without his current restraints.

Well, I know that's a lot of information and is a bit much to digest, trust me, it's taken me all day to wrap my head around it and I still feel like I'm missing pieces. If you have questions, feel free to ask! I'll keep you updated while we're in the hospital and after. I'm so proud of my little trooper...after months of poking and prodding and we can finally see the light at the end of the tunnel. Until next time, happy blogging! 

A Night Out With The Fam

For Christmas this year mom and Mark got all us kids tickets to go see the Idaho Steelheads, VIP style! Mom, Mark, Ethan, Cole, Joey, Garrett, and I all met up last night around 5:30 for a fun filled night at the restaurant section of the CenturyLink arena. The food and drinks were unlimited and oh so good and the company was even better. We got a table right at the edge of the balcony so we all had a front row seat. The Steelheads lost 3 to 4 but I honestly think we watched maybe 20 minutes of the game throughout the night. The boys were paying more attention I think but us girls just gabbed and gabbed all night; work, clothes, future plans all floating around in our heads and confirmed by each other's encouraging nods and positive feedback. I am so blessed to have such a wonderful mother and sister that have always and will always support me. It makes me so happy to know that the three of us are truly best friends and that we have created a bond that would be impossible to break. 

Thanks for the fun night mom and Mark! I think it's exactly what everyone needed and it couldn't have been more fun!

Revamp

I am happy to say that I finally have the internet. After months of holding out, four to be exact, I decided it was time to join the 'real world.' So I cracked, I have a cute little box with green glowing lights that reminds me on a daily basis that I am officially 'connected.' I do have to say though that since I am spending more time on the internet I have been spending less time watching TV which is always a good thing. 

I also got a new laptop this month and when I signed onto my blog for the first time in almost six months and was able to look at it on a full screen I almost cried! Unfortunately most my picture got deleted when I was redoing my photobucket account and it's just making the whole thing look very sad. So I'm going to clean this thing up; get it looking all pretty and presentable again and hopefully start posting on a more regular basis. I'm also looking forward to reading all YOUR blogs since I haven't had the time or resources to do so in quite a while. Thank you for the constant support and I hope all is well with everyone. Happy blogging!

Happy Birthday To You

I can't believe I have been blessed with this little life for a year now. Titus, you mean everything to me. I love you more than words could ever say and I'm so excited I get to spend the rest of my life being your momma. Happy Birthday my sweet, sweet boy!!


The Big Surprise
http://bassettmommy.blogspot.com/2012/01/big-surprise.html
Life in the NICU
http://bassettmommy.blogspot.com/2012/02/life-in-nicu.html