Busy, busy, busy. These are three words that best describe my life:) And no I did not punch the last four digits of my social into the microwave like I was in front of an ATM this passed this weekend. Actually, yes I did.
The last week has been full of appointments, therapy sessions, and most importantly...meeting and welcoming the newest little edition to our WHS family. I have been so excited to meet our new friends Laurie and Kaylee. I even got to meet Kaylee's daddy Mark and her big sister Amanda. It amazes me how many families are in our general area. (By this I mean within a 2 hour drive). So far we have met 7 other families with WHS children. These experiences are priceless to me. Meeting Laurie today was very special for me. I've always been the one asking questions and seeking advice from the other mothers. It was nice to feel like I was helping someone for a change. I was a bit nervous I must admit. I wear my heart on my sleeve and didn't want to be over emotional which I am most of the time. This is a very emotional time for Kaylee's family.....I remember very vividly how hard it was to except that my baby was going to be different. So, I didn't want to overwhelm her with information. I just tried to let her ask the questions and answer them the best that I could.
Our visit was about 4 hours long and I don't think there was one minute of silence. Like I said, there's nothing like meeting someone that is walking in shoes just like yours. Kaylee and Tanner have the same exact unbalanced translocation. This means that they have the same break point on chromosome 4 and the same addition of material from chromosome 8 onto chromosome 4. All the more reason for us to meet, right? That's what I thought. I mentioned before that most parents,, when given there child's diagnosis, are left feeling like their child will barely be functional. I've also said that this is SO NOT TRUE!!! I really wanted to show Laurie how very functional Tanner is, how interactive he is, how much he smiles, and what a BIG personality he has. I know everyone is different but the hardest part up to this day was coming to terms with the diagnosis. That first month or so was THE hardest time of my life. Everything since then has been uphill. Tanner has surprised us time and time again with the milestones that we thought were very far away. Of course it's not easy and there are ups and downs but nothing is as bad as I felt at the very beginning.
Kaylee is a beautiful little girl. I love her already. The connection that all of us share is a very strong bond. I can honestly say I LOVE the other children with WHS that I've met. Norrah is still captivating to me. I love hugging Karly and holding Mia. I love Haley's strawberry blond curls and beautiful blue eyes. I love sweet Riley and her amazing accomplishments even though we have not actually met her YET. I can't wait to hug her. Watching 20 year old Sara dance and jump could very well be one of the most beautiful sights my eyes have ever seen. All of these children have touched my heart. (You can see most of these children by clicking on the hyperlinks of their names on the side bar of my blog page.0
We made some time for some picture taking of course. I know you must be cursing me to get to these pictures, right. I will leave you in suspense no longer my friends. (I got permission to share these photos in case you were wondering:)
The new friends
The beautiful princess Kaylee. She is so cute and tiny. It's hard to believe Tanner was this small almost a year ago when he was born. He has grown so much more than we thought he would. I'm sure miss Kaylee will surprise her mommy too.
The new mommy friends and our precious babes
Onto all of the medical updates. Tanner was sick with a cold for about 2 weeks. He's finally over it but was cranky and tugging on his ear. So, after occupational therapy and a visit to the ophthalmologist I took him to his pediatrician to get that checked out. She said there is some clear fluid in there but it's not infected. It can sometimes lead to an infection so I'm keeping a close eye on it. A lot went on at the ophthalmology appointment. As most of you know Tanner has slight strabismus in both of his eyes. In Tanner's case this means that when he looks in certain directions his eyes actually tend to drift up and out. His right tear duct has also been blocked since he was born. His ophthalmologist had us patching his eyes to try to correct the strabismus without him undergoing a muscle surgery behind the eye. This did help a little bit but not quite enough. The doctor is pretty sure that Tanner needs the surgery. It just so happens that Tanner will be having surgery soon by the urologist for his undescended testicle so I suggested it possibly being done then when he's already under anesthesia. The doc said that he would definitely do a probe and irrigation on the blocked tear duct that day but isn't sure he wants to rush into the muscle surgery. He wants to sit on it and see him again before the urology surgery to make a final decision. I think if he's going to have to have the eye muscle surgery eventually anyway we might as well do it all at once. So, we will see in the next few weeks.
Tanner also has some new appointments coming up. I scheduled Nephrology to check up on his horseshoe kidney. It wasn't causing any problems at birth but I think an annual check up on that is needed to make sure every thing's working right. I also tried for weeks to make an appointment with Orthopaedics to take a look at his lower spine and overall bone structure since there's sometimes bone anomalies associated with WHS. Nobody really seemed to know where we fit in and I kept getting numbers to other offices.....it was a mess. Finally a nice lady set me up with diagnostics. So, it's a start. Another new appointment that we have that I have been so anxious to start is cranio sacral therapy. This came highly recommended by my friend Hannah (Riley's mommy). This isn't a typical medical appointment. It's considered holistic therapy. It's not something covered by health insurance and is typically very pricey. Through a friend this holistic therapist reached out to us and offered her services for free. I am so grateful. We also have an appointment with Neurology on Monday but that's nothing new. We also have the typical occupational therapy Monday morning and physical therapy Tuesday morning. March is going to be interesting. Since Tanner spikes fevers with his immunizations and has had seizures because of those fevers, his pediatrician and I have decided that it's in Tanner's best interest to get his shots one at a time. So, we will go the first three Mondays in March for those shots. I think that covers all of the appointment info.
I'm not sure if I ever blogged about the insurance company declining the neurologists request for the REAL Keppra (seizure med) or not. Whether I did or didn't they kept declining it even though Tanner was still having some blinking episodes and there have been many parents that say there is a difference between the generic and non-generic Keppra. So, we just decided to pay for it for a few months to see if there is a difference in Tanner. What I can say so far is that the two medications smell totally different......so how can they be the same thing???
Enough of all of that medical mumbo jumbo!!!! Let's see pictures of Tanner......and a VIDEO!!!!!
Tanner is doing so well siting by himself.
Tanner loves a good stretch.
I finally found a teether that fits in Tanner's little mouth. Speaking of, he has 3 teeth finally coming in.
Tanner decided he was going to start giggling tonight without me tickling him and I got it on video!!!! Bare through the moments of silence. The first giggle is cute but just hang in there for a minute because the second giggle is so precious and genuine. He melts my heart.
I also wanted to support my friend Lauren's best friend. She has a fundraiser going on her blog. I've copied and pasted from Lauren's blog to explain. Knowing Norrah: "All you have to do to be entered into the contest is head over to Holly's blog HERE and vote for one of her photo cards that will be featured in her contest post. With one simple comment you will be entered to win one of three prizes: a photo shoot for up to two people, a Love146 t-shirt of your choice, or an iTunes gift card. AND... the best part is that simply because you leave a comment on her blog - following contest rules, of course - (AND BECAUSE SHE IS PASSIONATE ABOUT DOING SOMETHING TO END CHILD SEX SLAVERY AND EXPLOITATION) Holly will donate $0.50 to Love146."
My friend Lauren also joined in and said she would donate another 50 cents everytime somebody mentions her blog, Knowing Norrah. It just takes a few seconds. Go to the site, pick your favorite card, and leave a comment about your favorite. Let's all chip in a few seconds for a really good cause. Don't forget to mention Knowing Norrah to double the donation.
Good night to all of my friends and good luck in the snow!!