Tuesday, December 11, 2012

A Very Special Tree

Several family members and friends have been telling me that this year Christmas will be so much fun with Lincoln, now that he's older.  Well, little did any of us know, but this Christmas is going to be extra special because this year Linc has his very own tree.  That's right.  We have two trees in our living room.

Last Saturday, Lincoln was invited to participate in The Children's Holiday Festival at a local hotel.  This special event benefitted St. Louis Children's Hospital and the highlight was decorated Christmas trees in honor of special SLCH patients.  Lincoln was among some 27 or so patients to be honored.

Lincoln was matched with a sponsor, who then decorated his tree with things Lincoln likes.  Saturday morning Lincoln, and some of his family members attended a reveal breakfast (myself, Dan, Grandma Vicki, Grandma Kathi, Grandpa Greg, Aunt Amanda, Uncle Drew, Uncle Pat and Aunt Jen) where Linc was able to meet his sponsor in person and was presented his tree.  All of the patient trees remained on display for a gala that evening benefiting the hospital.

Lincoln's sponsor was so kind, and a joy to meet.  Linc's tree was just beautiful, too!  I was having a really hard time holding back the tears as Linc took in the sight of his tree.  He was saying, "Car, car, car."  Over and over, as there are cars and trucks, and trains all over his tree, along with many colored balls, and different animals!

The whole room was breathtaking.  All of the trees were scattered around the dim room, all lit up.  There were even projected snowflakes dancing slowly around the walls of the ballroom.  Each tree was unique, just for each patient, and it was so wonderful to see all the individual likes of the featured patients.  There were also short bios of the patient next to each tree.  It was just as breathtaking to read all of the amazing patient stories.

The event was just so sweet and special, and we were so honored that Lincoln was chosen to receive a tree.  As far as I could tell, all of the patients were those who had come close to death and made it through.  It was a very touching breakfast.

The Monday after the event, this truck pulled up outside our house...

And in came Lincoln's tree, still decorated and all wrapped up in plastic.  The nice mover unpacked Linc's tree and set everything up for us.  They even had on little Santa hats!

We had put up our family Christmas tree the weekend after Thanksgiving and I thought about taking it down after learning that Lincoln's tree would be delivered afte the event.  I decided, though, that it would be just that much more special for Linc if we kept both up.  It was a tight squeeze in our little living room, but they both fit!

Lincoln cannot stop talking about the train topper on his tree.  He absolutely LOVES it!

There are plenty of cars on the tree, too.

And lots of "baou" (balls)

But this little puppy ornament has to be Linc's favorite.  This is always the first thing Lincoln points to on the tree.  Well, if he doesn't point to the Train on top first!

Lincoln just loves to look at his tree.  He has the biggest grin when he sees it.

I cannot wait to see Linc's face when he sees all the presents Santa brings and leaves under his tree.  How many boys can say they have had their very own tree?  Linc is definitely a very special little boy, and he has a very special tree.  It's going to be a very special Christmas, indeed.

Friday, December 7, 2012

Last Surgery Complete - Success!

Lincoln's Hypospadias Repair -stage 2 surgery was this past Wednesday.  Everything went really well.  Linc's Urologist was able to get everything fixed up so we are not planning for another surgery!  We didn't know for sure going into this surgery if it would be Linc's last, but we are so happy that it was.

Even though we have been to Same Day Surgery twice before, this visit was different in several ways.  Mostly because Linc is older and he was more aware of what was happening.  I am glad that he was offered versed before being taken back to help him relax and not be anxious.  Linc was not too happy to be measured by the nurse or looked over by the docs during check-in.  He was definitely more relaxed after being given the med.

This time we were asked to walk Lincoln back to the entrance to the OR and give kisses there.  (Previous Day surgeries, Linc was just carried out of the patient prep room by Anesthesia.). I explained to Linc as we walked back that he was going to go to sleep for a while and Mommy and Daddy would come get him when he woke up. Now that he's older I actually need to verbalize what's happening.  I'm still getting used to remembering that Linc understands a lot now.

As we approached the OR entrance, I realized that the last, and only, time we were in that location was when we walked with Linc from the NICU to Surgery for his CDH repair.  Even though I really felt very good about this surgery and really had no worries for Lincoln this time, I started to feel those anxious feelings as we got closer to the doors.

My stomach got a little knotty as we said good by, kissed Linc and handed him off to the nurse.  A little bit because Linc is older now and you can see the fear in his eyes when he is unsure, but some of it was just from the memory of being in that spot over a year ago.  It really was strange how those old feelings returned after so long and were triggered by just the sight of the OR.  Thankfully, Linc went in without much of a fuss at all.

During the day, we received update calls from the nurse in the OR.  Even though Linc's surgery ran over the allotted time, everything went great.  During one of the update calls, we learned that the Urologist was able to perform everything she needed to and wouldn't need to do a 3rd surgery on Linc!  We were so happy to hear this!

Once surgery was complete, the Urologist came out to talk to us. She was also so happy to have been able to get everything completed in one surgery.  She informed us, though, that she wanted to keep Linc overnight for observation purposes.  She felt this was the safer option based on Linc's history of having trouble waking up after anesthesia, and the doc wanted to be sure Linc's pain was managed well after such a big surgery.  This way Linc would have access to IV meds if he needed them.

So, once Linc was awake and in recovery, we headed back for a few minutes to see him, and then we were moved upstairs to an inpatient room for the night.  Linc was really in good shape, I mist say.  Linc didn't need any supplemental oxygen after waking up to keep his saturation over 90 and he didn't need any additional albuterol.  He was a little agitated right as he woke up, but I think that was more just being scared.  Just to be sure, I requested a small shot of morphine in Linc's IV, and he fell right asleep. Linc did just fine the rest of the night with his pain being managed with just Tylenol and Ibuprofen.

Linc was pretty sleepy after surgery.  He really didn't wake up to eat or drink for about 5 hours after he was out of the OR, which is about the same as the last two Day surgeries.  Once he was up though, around 7pm, he was just happy as a clam and played in his bed and ate a little.

I cannot say that any of us really got a good nights sleep between the nurses coming in to give meds, and Linc's pulse ox alarming because he moved around too much.  I'll tell you what.  I do not miss that monitor at home one bit!

We made it through though, and Linc was discharged Thursday morning with a few prescriptions and a stint/catheter.  Linc has a follow-up appointment with the Urologist on the 26th, where she will remove the catheter and give Lincoln an overall check.

The Urologist has told us that with Linc's case, he has a somewhat high chance of some complications in the future, such as springing a leak, and that we will need to be on the look out for symptoms in the next few years.  In that case, another surgery will be required to fix the defect.  Hopefully, Linc heals up properly and no more surgeries are needed.

(Warning, mushy content below!)
At least for now, we can look forward to normal potty training and feel relief.  All of Lincoln's defects are now corrected.  It feels so good to be on the other side of all of this.  This long journey that has been 18 months long.  I'm so proud of my boy.  He's gone through so much and I just know he's going to be okay.  Better than okay.  He's going to be something magnificent, because he already is.  He is my warrior, champion, fighter, my everything.  The love of my life.

So far at home we have only had one instance where Linc was too tired and didn't take his meds well.  Otherwise, he has been doing just great, playing and eating like normal.  He seems to be healing well too, and is looking better "downstairs" than he did last time around.  Things are looking good.

And now, more pictures of Linc in the cutest little hospital gown!

waiting to go back to the OR 8:30ish Weds

Very sleepy still, around 6pm Weds

Up and playing strong 8pm Weds

Ready to go home as you can see from the blurred picture as Linc runs. 10am Thurs

Stay tuned...Tomorrow morning Linc and his family are attending a very special event benefitting St. Louis Children's Hospital that honors special patients.  Lincoln will be present with his own Christmas tree over breakfast!  The event is part of The St. Louis Children's Holiday Festival.  I'll fill you all in on the details tomorrow!

Tuesday, December 4, 2012

18 Months

Lincoln is 18 months old! It's been a while since I've really updated about what Linc is into, so this post gets a bit long. Hang in there. It's all worth it!

Lincoln is just the happiest 18month old I've ever met. He is smiling all the time. People always ask when we are out if he is showing off or if he is always that happy, and I tell them he is always that way. Its a wonderful change from his colicky days when he was younger than 8 months. Lincoln is not too shy and likes to wave and smile at nieghbors and people in stores, which gets him lots of attention!

Lincoln has discovered recently that feeding all of the animals treats is a great way to get them to pay attention! I have to help Linc give dog and kitty treats at least two times per day now. Lincoln knows where the treats are in the cabinet and will get them out and bring the bags to me to help him. Linc loves to walk around holding the bags and shreiking with joy as the animals get excited too. Its funny.

Lincoln is really into cars and trucks, now. He loves little matchbox cars (I just have to be sure that the ones we give him to play with dont have the removable wheels or other pieces). Linc likes to pretend the cars are driving and make the motor sound, which he is fantastic at. "Ddrrrrrrr." I think it is so cute when Linc will "drive" something that isn't a car, like his fork around his tray at a meal. "Ddrrrr." Lincoln also recently is starting to pretend on his phone. He walks around holding it to his ear. And just the other day, for the first time, he was walking around for at least 20 mins with a play bowl and spoon, pretending feeding himself something! I love to watch his brain grow before my eyes!

Language is huge with Lincoln. Even before he was really saying words, he was making noises all day long. Literally. He's a talker. Now that he is starting to understand more and using words himself, lots of activities now involve comparing the names of objects. Lincoln likes to present two objects to you and ask, "deh deh?" (Whats this, maybe?) I will tell him the name and we repeat with the other object. Back and forth until he is satisfied witht the comparison. He then smiles and goes back to playing on his own. This game is played several times a day. Usually with two cars or with two magnets from his magnet board.

I think that Lincoln literally is saying a new word eveyday. And he is making inferences about concepts, too. I love that when ever I say something about my being cold or that it's cold outside, he says, "ice." Some other words he uses are keh-keh (kitty-kity), bay-bay (bailey, our big dog, a close second favorite) ou-sigh (outside), baou (ball), bah (bath). Just yesterday he said appa (apple). Lincoln will jibber-jabber and it sounds like he is talking in sentences, but none of it it actually words. He just loves to talk and make noise, including animal noises for duck (quack), monkey (ah ah), and elephant (bbrrrr).

Lincoln still loves books, too, although he is starting to play a lot more with other toys. He will sit alone at least once per day to look through his board books. He also will bring books to me to read for him. His favorites right now are Dr. Suess's ABCs, and Boytons Belly Button Book, as well as the DK Baby Pets. (He's loving animals right now).

Music has always been very influential with Lincoln. We found out at an early age that he responds to classical symphony (mostly mozart) very well. We keep a cd of his in the car for times when he is fussy. We just turn on his music and he calms immediately. Lincoln also loves the tempo of solid gold oldies, like The Beatles (he naps to this), and really enjoys being sung to. We can get through any booboo with a round of "The Wheels on the Bus" and "If You're Happy and You Know It." Linc loves to clap his hands and stomp his feet when prompted for the latter.

Lincoln is starting to through tantrums, but they are small. Just a little foot stompt and an aggrivated cry when he is told no to something he really wants (like giving the pets treats right as we are sitting down for dinner, or for the fifth time that day!). He does have a short fuse though. He gets mad quickly, and almost gives a little shake as he stiffens his body during his rage. But a minute later he is smiling again. I'm glad, so far, his tantrums are not involving him flopping on the floor like a fish and screaming!

I took Linc to Dr. P last Friday for his well visit, and everything went well, except for his weight. He scored very well on the checklist she asked and passed the Autism screening. He got his monthly Synagis shot, too. She was very pleased with his talking skills that he showed off for her, and she said physically he looks good. He's just not gaining weight.

18 Month Measurements:
18lbs 8.3 oz (below the growth chart - less than previous month)
30" tall (less than 3rd percentile but pretty much on trend)
HC 48.3cm (~70th percentile - leveling off)

Everyone is always asking how Lincoln's weight is. Family, friends, and doctors. We all know that Linc is a little guy, and weight gain seems to be the area that is the most challenging for him. I am always trying to add calories to his foods to help his gain "catch up growth." Butter, creams, extra cheese, and his powder supplement and formula are in the mix, too.

If Lincoln were at his goal of 10th percentile (his ranking at birth), he would weigh about 22lbs and be 31" long, which is still not big. But when you only weigh 18lbs, 4 pounds is a big difference. 

How much has Lincoln grown and gained? Well, this month he is actually down about half a pound. Lincoln really has very good behavior most of the time at meals. He eats pretty typical amounts of solids, for the most part (at least 4 tbsp per meal) and is not a very picky eatter, which is so great. I'm so happy that I'm not writting that Lincoln has trouble gaining weight due to some adversion to food or some other physical restriction.

He just simply requires more calories than he is consuming. He doesn't drink the typical amount of fluids an 18 month old does. He IS picky about what he drinks. He finally will now drink regular whole milk from his sippy cup and from an open-mouth cup (that I hold), but he only drinks on avg about 4oz per day. If he drinks more, it's usually because he didn't eat well at a meal, so doesn't helping with his calorie count.

So the plan is to switch back to a high calorie/ concentrated formula in place of milk to help Lincoln get a few more calories in. Other factors that contributed to Lincoln's recent weight loss are his ability to RUN now, which he does all the time, and the fact that he dropped the bottle, and is picky about what's in his cup as far as thickness goes. So, this transition period is something we will work past and I know Linc will gain again. He really is doing wonderfully, for any 18 month old, and especially for a CDH survivor.

Linc is heading into Same Day Surgery tomorrow (hopefully his last). Please keep him in your thoughts and I'll be updating you all as soon as I can.

Linc looks so grown up at 18 months!
Compare this photo to his previous frog pics below.
I wish I would have taken more of these through the months.

8 months

2 weeks

Parents As Teachers Visit

Mrs. Costello came for a visit the other week after Lincoln's long break from the Parents As Teachers Program.  While Linc was receiving home therapy, I put his PAT visits on hold.

The visit went great.  Mrs. Costello brought a standardized questionnaire for 18 month old children to evaluate Lincoln.  I am so happy to report that Linc scored in the normal range for four out of five areas(gross motor, fine motor, problem solving, personal-social), and scored close to the cuff on the fifth (communication), meaning we should watch him and provide learning activities in this area but he isn't behind.

Mrs. Costello was also really pleased with Lincoln's development.  She hadn't seen Linc since he was about 6 months old, so it was quite a change for her.  She was so pleased to see that Lincoln is so happy, social and physically doing well.

Unfortunately the funding for PAT in our district has been cut, so the program only allows for one visit per year per child for a check-list.  Mrs. Costello said that she would try to see Linc more due to his medical condition, and she would call for a visit in January 2013.

I'm glad that Missouri has the PAT program at all, but a little saddened by the cut.  Thankfully though, Lincoln is watched so closely just his pediatrician, neonatologist, surgeon, and dietitian, not to mention that he is still enrolled in the MO First Steps Program, so I really have a plethora of providers to help me help Lincoln as he develops.

Lincoln's "big" standardized test will be the Bayley test given at SLCH at his 2 year visit, scheduled for June 2013.  This test is given to as part of his NICU follow-up and measures his development to make sure he's on track.  I have a feeling he's going to rock it!

Wednesday, November 28, 2012

Fall Playtime

Lincoln really enjoyed himself this fall, playing with some new items and some tried and true. He's getting so big now. The time is just flying by. I find myself trying to make mental imprints of all the adorable things Lincoln does now, but I know I won't be able to remember it all. So, taking pictures will help me in the future to remember one of the best Falls I've ever had. Check out some of Lincoln's current favorite playtime activities.

Feeding Cookie Monster


Flashlight Play

Magnets, a new favorite
raking leaves and just playing outside
(when you are married to a mechanic,
used tires can be found scattered in your backyard, ha!)
playing Peek-a-boo, I-see-you with Peanut

"Ball Pit"
his crib gets some playtime at least since he doesn't sleep in it much!

horsing around with Mommy
Linc's new tunnel
(I love that he only has one sock on.
Representative of a typical day of Linc taking his socks off.)
Linc just loves old milk jugs, or anything from the recycling bin really!
Bailey gets some love too

Bubbles and Balloons in the tub

Some good splashing, too!

Sometimes, I think to myself, I wish I could keep Lincoln right at this age and size. I love his curiosity and his happiness, and he is just the right size for snuggles! I'm sure every age I will feel the same way and Lincoln just gets more and more amazing!

Saturday, November 10, 2012

Second Cold/Flu Season

The cold/flu/RSV season is here and I just wanted to post a quick update on our plans to help keep Lincoln healthy this season.

While I'm happy to say that Lincoln is stronger and healthier than he was last year, I do not think he is quite ready to be "thrown to the wolves" when it come to respiratory illnesses. I won't necessarily be isolating this year, but I still would like to take precautions to help minimize Lincoln's exposure to colds and flu viruses.

Remember, Linc has only been off of oxygen for 6 months and still requires a daily inhaled steroid, as well as albuterol treatments, to manage his airway when he is NOT ill. Any illness will make it that much more difficult for Lincoln to breath and oxygenate his body. A side effect of taking his steroid is that he is even more susceptible to infection! (Linc has already fought two colds this season! Which he rocked!) Also, illness tends to leave Linc with a decreased appetite. This only adds to the difficulty of getting Linc to gain weight. When Linc doesn't grow, he doesn't develop.

For these reasons, his doctors and I have agreed that Linc will benefit from getting Synagis shots again this season. Lincoln is still at high risk for having complications if he contracts RSV. Synagis is an antibody shot that would help Linc fight the virus if he is infected. Lincoln got his first shot at the end of October, and will get one every month through March.

Thankfully, we haven't had any insurance approval problems this far since this medicine is extremely expensive (around $1500-3000 per shot!). But this just goes to show that even the insurance company views Lincoln as high risk for respiratory viruses. (Many CDH families are currently fighting ins denials for second seasons.) Our entire family has also gotten the flu vaccine this year, which I believe is a great idea for everyone to help stop the spread of the flu virus.

We will also be washing hands in our house frequently (when arriving home from a public place, playing outside, etc.) and using hand sanitizer a lot while out. I also have a can of Lysol in the car to use on shopping carts, when I absolutely have to bring Linc along to the store.

For the most part, I would like to try to keep our life as close to normal as possible, without unnecessarily exposing Lincoln to ill people. If you are wanting to visit Lincoln this season, please let me know if you have been sick or around others who are so that I can make an informed decision about visitation. As of now, we plan to attend family functions this holiday season, where we did not last year. But I am fully prepared to leave early if I feel Lincoln is as risk for getting sick. I do not plan to take Linc out to public museum and parks, though, and just generally plan to keep public spaces limited.

I do planning to finally return to working full time sometime during this season, though. This means that Linc will need to start going to daycare. I have mixed feelings about leaving Lincoln, but we are both ready I think, and our finances tell me it's time! I am so thankful, though, that Linc's Grandma (Dan's Mom) is able to watch him and he won't have to attend public daycare. I think I would just be ridden with guilt and terrified to send him off to a group of strange, sniffling kids! I know Lincoln is in the best of care while at Grandma's, which will really help the transition. One of Linc's cousins does attend preschool and is also at Grandma's, however. So, I am especially thankful that Linc was approved for Synagis again this season.

Please do not take these precautions personally. These measures only attempt to reduce spreading germs that are found everywhere! I anticipate this to be the last season of extra precautions. Every one was so kind about obliging my wishes last season to help to keep Linc healthy. Thank you! I appreciate your efforts and support. Thank you in advance for this season, too!