This is what SUMMER is all about!

Yesterday evening was a Lake View Drive Inn night. After a cheeseburger, a hot ham and cheese sandwhich and ketchup bathed french fries. Harrison and I went to play on slide and sanbox...well that was until daddy came out with this...

This one is my favorited. I edited it in color, black and white and vintage.

 Could his hair get any blonder (now where are those curls)?

Audiology & ENT Appointment

Who is this well behaved child?

Certainly not mine after his behavior at his immunology appointment yesterday...

The appointments today were the complete opposite from yesterday. Harrison was a good little boy. This was a HUGE relief since I was on my own for his hearing test with the audiologist. Harrison even let the audiologist put listening devices in his ear canal and sat relatively good so that the devices could pick up tones in his ears.

The results were good, well actually better than good, they were great! This was the first hearing test Harrison passed to it's entirety since his tube placement back in December. The audiologist was please with the results as we were too.

I did speak further in detail about Harrison's language development with the audiologist. Harrison has the ability to hear all the important factors for developing speech. What maybe lagging is his ability to process those sounds into words themselves. If Harrison continues to lag in speech additional hearing tests can be done to help determine this processing, however these tests aren't done until the age of 3 or 4.

After the audiology appointment we headed to see the ENT doctor, Dr. Case. Dr. Case was pleased with Harrison's tube placement and the fact his ears have no fluid residing in the canals at this time. Currently Harrison has been ear infection free for 1 month (YEAH)! Ear infection free is a good start, but we also discussed Harrison being so congested, vomiting and draining all the time---in fact a solid month now. Dr. Case suggested that having Harrison's adenoids taken out might be the next line of defense to clear things up and we don't have this constant sickness. I went into detail with Dr. Case about the appt. with Dr. Mahr yesterday and the fact he has started singular. Dr. Case seemed please that we are working with Dr. Mahr. At this time we will continue to watch and wait approach.

Harrison will see Dr. Case next in December, unless he is victim to yet another ear infection. I told Dr. Case that maybe Harrison has already had his last ear infection and maybe he won't get anymore. I felt pretty confident in saying this. This is the first time in months and months I have been confident in much of anything when it comes to Harrison's health. I can't say Dr. Case gave me the look of agreeing, but at this point I am high from his  immunology appointment from yesterday...nobody can rain on my parade.

CHEERS to HOPE!

The next trip down to Gundersen is scheduled for July 29th with Harrison's primary doctor (Dr. Gerhard).

Swinging

Another big boy accomplishment?

Swinging.

REMEMBER...

 The cutie on the left at 7 Months, the cutie on the right at 19 months.

 LOVE.

 Harrison had fun swinging, though we didn't let him swing solo for long. Mommy is fearful of falls as she broke her arm for the first time at age 2 falling off a swing backwards and Grandma Di did same at age the age of 9. Heredity perhaps?

Dr. Mahr

Today was a good day. Today was a great day!

This is the first doctor appointment in 6 months that seems promising.

The appointment started off great to begin with. Dr. Mahr came in and introduced himself, let us voice our concerns and went on to explain his thoughts on Harrison's first year of life. Dr. Mahr has probably the best bed side manner of any physician we have ever had, even better that his primary physician. Mr. Mahr tells you like it is, yet he he adds humor and caring into his mannerisms. At one point during our appointment he told us (jokingly) that Harrison is a great contraceptive. We assured him that he is. Sorry Grandma and Grandpa, there will not be a baby number two for quite sometime (in the meanwhile keeping spoiling Harrison). As we told the doctor this he told us (again jokingly), "Well, I don't think you so procreate...this is quite a mess." Then he went on to say that that didn't stop him.... he has one child with food allergies and the other one with asthma and allergies---you never know what you will be dealt.

Dr. Mahr was very knowledgeable on his prematurity and sicknesses. It was AMAZING to have someone say to us, "Wow, you really have had a rough year, all you want is a healthy child, is that too much to ask?" I think Dr. Mahr WON my heart right then and there.

Looking over Harrison's labs and a preemie... The state of WI does additional newborn screening for major autoimmune disorders that the state of Minnesota does not. Since Harrison was technically born in the state of WI, he had those autoimmune test done in the first few days of birth. Those labs came back normal---which is nothing but good news.

Dr. Mahr went on to explain that he feels the immunity issues Harrison is facing can be likely caused from his prematurity (but this may not be the only cause) and his immune system is not yet matured. This wasn't new news to us, this is something we have heard before, in fact several times. However, Dr. Mahr went on to explain that this is only a presumption as his condition could very well be something more. He said that Harrison's medical history suggest he may also have T. IgG Subclass Deficiency and Specific Antibody Deficiency. (If you remember from my blog entry below---this is a immunity issue that I researched the other night). IgG is a immunity disorder that is treated aggressively with antibiotics. There has been no replacement approved deficiency, but the awareness to treat the disorder with lead to faster recovery and longer stretches of being healthy. Sometimes children can outgrow this deficiency or essentially become symptom free, but carry the deficiency their whole lives.

Doug and I opted out of blood work to further pursue this diagnosis today. We did this for a few of reasons. At 19 months (16 months corrected) the immune system is immature, very immature, so the results are often hard read and clearly diagnose. Secondly the Dr. Mahr suggested we try a asthma/allergy medication Singular to help treat the daily symptoms. He said that over the past year we have just been treating the episodes and not treating the ongoing congestion that has been following for months and months. This medication should help clear up the congestion in his chest that leads to frequent vomiting from his coughing as well as clear up his nose that never seems to stop running (and is the greatest contributor to the past 12 ear infections). And lastly we chose not to do that lab work because the diagnosis of IgG deficiency doesn't have have replacement therapy for the condition. Beginning the medication made the most sense to us.

Something else Dr. Mahr said that he was confident is saying is that Harrison had Respiratory syncytial virus (RSV) http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002531/ prior to his diagnosis of Pnemonia back in March of 2011. He said RSV leads to pneumonia and ear infections and the symptoms and the deep congested cough can last months after having the virus. In the spring of 2010 Harrison was protected from RSV with the vaccine (which cost more that $1,000 each injection). In 2011 Harrison prematurity no longer qualified us for the vaccine, our insurance wouldn't cover it. (Damn you Blue Cross Blue Shield----quit being so damn cheap). Well back to the RSV---this is a very probable cause to why Harrison still sick today.

We are going to give the new medication 3 weeks to start working before we conclude if it's helping or not. So far Harrison gobbled up the chewable tablet on the ride home from the appointment today. If after the 3 weeks has passed and we aren't seeing any improvement Harrison will be started on a inhaled steroid and a nasal steroid. If after continued daily treatment of the steroids doesn't provide any relief Harrison will need to undergo labs to dig deeper into and a clearer diagnosis. What's so good about this whole situation is that there is a plan of action... The coarse of treatment just doesn't stop. Dr. Mahr already talked about treating Harrison next fall, thinking we may need to take a more aggressive approach to his treatment plan.

I can't keep saying how good it feels to be heard and that we didn't have to hear another doctor conclusion is that it's been a hard winter and things will get better when the weather gets warmer and sends us on our way or my absolute favorite---maybe it's his teeth!

Our next appointment is September 16th with Dr. Mahr (who also comes to Winona--yeah). However, if we aren't seeing relief in 3 weeks we will follow up sooner.


Tomorrow morning Harrison has a audiology appointment and following his hearing test we meet with his ENT doctor, Dr. Case. I am expecting he passes the hearing test as he has in the past, that is, if he even lets the audiologist test him. Harrison hasn't been the good little patient that he once had been. Appointments are ever so challenging (today he refused to sit or stand for a weight and length check) and tomorrow it's just Mommy and Harrison...WISH US (ME) LUCK!

Frustration

The title says sums this post up.

Despite the fun weekend away we----there has been a lot of frustration mingled in the past week and weekend. I am hoping we get answers on our Thursday's appt. with the immunologist. Harrison has been almost free for one month since his last ear infection (which is a welcoming relief), but whats not so welcoming is his ongoing congestion and horrible cough (it's been two weeks now). During our MOA trip on Sunday he ended up puking all over himself and his stroller during a cough attack. This innocent isn't a fluke---this happens regularly (and seem like it occurs especially when we are out in public).

I honestly feel that Harrison has missed out on a lot in life being so sick (and I know he won't remember these years, but this boy deserves to be healthy and happy). I hate seeing him cry and I hate feeling like I can't do anything to help. This is supposed to be a care-free childhood! I am beginning to think his birth and the complications to follow his prematurity were just little pebbles in the road and now we are hitting pot hole after pot hole.

I was pretty pessimistic until yesterday that the specialists would find anything wrong with him, but now I have a gut feeling that there is something more. I feel so torn... It's like we want to know what is causing him to be sick all the time, but at the same time you don't want find out it could be something more.

I went out a search tonight for immune system issues and found that Harrison fits this immune diagnose to a T. IgG Subclass Deficiency and Specific Antibody Deficiency (http://primaryimmune.org/about-primary-immunodeficiency-diseases/types-of-pidd/igg-subclass-deficiency-and-specific-antibody-deficiency) . The positive of this deficiency is that this condition can lessen with severity with age and there is a possibility he could out grow this as well.

Maybe I spend too much time looking for an answer... But we are so desperate for an answer.

This is our world.

The Fourth

Where do I begin? We had an incredibly busy weekend, which is a contributor to the lack of recent posts.

Saturday Grandma and Grandpa McKee came for a Winona visit. We spent the afternoon at River Fest in Lacrosse. Harrison was having a rough day and  as temperatures still soared in the 90s, we didn't stay longbut while we were there we still found some fun in the sand, bounce houses and riding the train (which daddy posted video below). And be prepared for lots more video since daddy upgraded his phone to a Android (and he is a little app. obsessed at this time).

He let the Harbor Master pin him (and then he immediately took it off).

 Here is a crabby boy...

We watched the ski show...which if you were there wasn't really a ski show if you have ever been to a real one before, but none the less, it was entertainment!

This next photo I LOVE. THANK YOU DADDY for capturing this sweet photo! I love memory card surprises like this!

After our trip to River Fest we headed back home for VERY MUCH needed nap. Later in the evening we visited Grandma and Grandpa at their hotel. We took Harrison down to the pool. It seemed he didn't take as well to the deep water as he does splashing at the Aquatic Center.

The flash didn't fire here, but this one was too sweet not to share.

Sunday morning we pack our bags and headed to St. Paul for the rest of the weekend. That afternoon Harrison spent a couple of hours playing the Minnesota Children's Museum. We didn't stay as long as we planned, Harrison was having another rough day (seems we are in a string of roughness, most likely due to this prolonged stretch of sickness). After the Museum Harrison was ready for a nap. He napped while daddy and I walked around Mall of America purchasing some cruise attire in preparation for our trip.

Don't you just love this? He carried this dog everywhere. We ended up buying Harrison a friend T---which we will introduce you to later.

KISSES!

 This was our first time out on the roof top deck of the Museum. Harrison did some mopping (one of his favorite household chores).

 WATER FUN. I think that I have already posted a gazillion photos of him playing in this water explore area...but he this smile is too contagious not to share.

 Lastly---a silly boy relaxing at MOA.

Sunday night was fun...we took a LONG walk in downtown St. Paul by Harriet Island. It was really pretty at night and we found a stretch of 4-5 fountains that we knew Harrison would love to come back and play in the morning (he was asleep by this time).

Monday morning came quickly, but it was welcomed as Harrison slept through the ENTIRE night, which doesn't happen too often when we are away from home.

Remember the fountains that I mentioned from the night before?

 Waving to anything big and loud...Today it was a barge.

 I had to laugh when I saw this one.

 MUCH better...mutual kisses here!

Yes, we maybe just be the most awesome parents ever... Do you think your parents would have done this for you at 8:30 in the morning?


On the last part of our quest we ended up Como Zoo and Conservatory. We ended up only visiting the zoo as I envisioned Harrison picking all the flowers from the plants in the conservatory.

Monkeys! According to this toddler, Monkeys were by far the best attraction. Next time you see Harrison you need to ask him, "What sound does a monkey make?" He has the cutest Monkey sound I have ever heard.

Enjoy the very few snap shots taken during the trip---it was much to hot and humid to take many.

 MONKEY watching...

 So, how big is your paw?

 MORE MONKEYS!

 Just after the Sparky the Seal show...Hi Daddy WAY up there!

Do you love some of the photos posted tonight? Most were taken by daddy. I have to say it was nice break to step out of the photographer roll for the weekend and just be mommy (it's been a busy summer for my photography business and if you haven't become a fan yet, check out my FACEBOOK page. I am nearing 200 fans in my first year---THANK YOU).

You can click on this link
http://www.facebook.com/pages/Tiny-Miracles-by-Amanda-Kelley/133064563399243

Riverfest

Harrison having fun on the train. What a BIG boy.

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Just because...

Lately...I swore the photos of Harrison just keep getting cuter and cuter, and I can't credit my myself for these photos, Harrison totally makes these!

I love this family photo (which is currently my Facebook profile photo) Thank you Aunt Carolyn for capturing our family in all smiles!

 These next two, super cute! He helped daddy wash the cars over the weekend.

 This is his idea of playing with chalk, but I have to say this is the cutest rainbow butt I have ever seen! :)

 Prepare yourself for this last one.

Don't say I didn't warn you that this would be super cute.

This was a Cannon moment.

AWWWWWW....

I came home from an evening from doing a photo session and found this. I hope Whitney Dog didn't mind sharing her kennel, bed and toys.

The boy is 19 months!

As each month passes, he never stops amazing us. I love all the little accomplishments. The biggest hurdle he has tackled this month is communication, which I mentioned in a previous post. He will try to copy the words, "Ma, ma", "Da Da," "duck,", "dog," and the newest "cat." It seriously felt like Christmas when he started imitating words. His language also continues to blossom with signing. We are working on the following signs, "help," "bath," "outside," "love you" & "blanket". He almost has "bath" down (signing correctly about half the time) and he does his own version of "help." There is a ton more signs we can work on, but I find most of success in picking a few signs and letting Harrison decide what new sign he deems as cool enough to learn. It took us nearly a month to teach him "please" and he picked up 4 other signs before he showed any interest in "please," now it's his favorite sign.

This boy can eat. I know this isn't new news, but it's worth mentioning he likes to have seconds and thirds. Something new to food is his preference. Harrison will still basically eat anything, but that all depends on his mood. One thing we have to get stricter about is feeding him from our plates. It seems he is more interested in what we are eating, even if it's the same thing. Well if anything all of his good eating should weigh in well at his "Well Baby," (or hopefully healthy) at ths end of July. I speculate he weighs between 22 and 23lbs and is about 31" inches tall. He is definitely growing like a weed as they would say, but  despite his catch up growth, he still fits in 9 month Carter onesies, 6-12 Month 0ld Navy Onesies and 6 to 9 month shorts. I have yet to figure out why they make shorts so big, or long in that case, they are shorts after all, not "man capris."

Moving right along to mobility this month. I sware he is a monkey, climbing on anything and everything. Harrison is right on development for walking, running and now...JUMPING. This toddler loves the shaky bridges at parks! He is also is a pro crawling stair climber and is well on his way to walking up stairs holding on to the rails. He is also learning to kick and ball and is coordinating swinging the golf club and making contact with a ball. Oh and not to forget to mention, his dance moves---suburb. Going back to the park, he often doesn't need our help growing up stairs to a slide, which he also indepently slides down by himself. Boy, how we can people watch at the park as well. It just amazes me how either overprotective parents are, or how little they pay attention and yes, I would like to kick the next parent that puts their cigarette butt out in a childrens play area. Hello? Did they forget that there are tiny hands around to pick up their cancer stubs?

Did you happen to notice all this blonde hair on this once so bald head? I love the comments I have been receiving----"Look at all that hair." Apparently daddy was wrong...he told us early on that Harrison would be bald forever. That silly daddy!

The highlight of the month? Listening. Yes, I just typed L-I-S-T-E-N-I-N-G. Believe it not he is taking very good direction. Tempertanturms are even getting preventable if he is starting to melt down, we are able to pull his mood back in a better direction with distractions. One thing we are diligent about is using the word, "don't," and "wait" (which he can sign too) if he wants something we tell him to way "bye" and that's usually enough and he is back to looking for something bigger and better.

One whole book. This is the first month Harrison has sat down long enough to make it through one book. The toddler room commented that Harrison struggles to make it through story time after the first book. Honestly, one book is an accomplishment. This toddler is no kindergartner. Usually, Harrison in on the go, go, go.  We try to incorporate a book with bedtime. Harrison has traded in his beloved monkey book for a new jungle book... Let's just say it's refreshing reading something different, though I have half this story memorized already.

Watching Harrison play is entertainment... who needs cable when you have a toddler? He imitates sounds of cars and trucks..."talks" to his boys and pretends to read books. Tonight he made the guzzling sound of filling up the gas tank on his lawn mower. And the priceless moments? When he just breaks out in a dance, music or not, he gets up and shows off his moves.

Help. Help. Help. Harrison wants to help with anything and everything. When he is home with me on Fridays he helps me dust, he hands me the bottles to put back in the shower once I have scrubbed it, and I can't forget sweeping...which he does on both the hard wood floors and carpet. We have even given him his own first chore (because it's never too early to start). He feeds Whitney dog. He has mastered taking her food from the pantry to her dish without spilling.

Health wise this month---the greatest accomplishment of all... No ear infection for one month. I can't say he has been healthy because he hasn't. Daddy was convinced he was going to get one with the this cold...but after 5 days the cold subsided. Ha, but relief didn't last long---within 3 days Harrison started coughing, sneezing and running a low grade fever. We are hoping to steer clear of another ear infection with this latest cold. Next Thursday we meet with the immunologist who maybe can shed some light on to what maybe be causing sickness after sickness. I have to say I told you so, to the next doctor who said, oh yeah, warmer weather will be better... Not in our case, June happens to be a prime time for Harrison sicknesses.

In a nutshell. This kid is amazing.

See, SO up happy here, I hate not getting my way...