Abundant Still

I am so sorry for the delay in updating the blog! We have been very busy with the transition of Scout Properties to The Lanier Property Group. We are demoing new property management software and working on the marketing and branding. We can't wait to show you our new website and Facebook page (hopefully within the next month)! It is all good stuff, but time consuming!

Here are a few more pictures from my awesome day in Chicago that happened last week

High Tea at The Drake Hotel in Chicago

Tara & I shopped, laughed, ate (boy did we eat!), and had a great time! It really was a once in a lifetime experience. It felt crazy to be in Chicago by the time Oliver got to preschool. The grand finale of the day was high tea at the Drake Hotel, on Chicago's Magnificent Mile. As you can see, there is a lovely harpist playing and the setting is very magical. I am sure the tea I had there was the best in my whole life. There was a little girl behind me in a tiara and pink princess dress. When I saw her Tara leaned in and whispered “This is your princess tea”, knowing how much I long to have a daughter to do high tea with. Tara has three boys of her own, so we did the glitter/girly/tea/shop thing together and got out some of that pent-up estrogen.

My favorite moment of the whole trip was shortly before this photo was taken. We had to get off our plane right before take off because of a flap failure. We were already delirious....

Seeing Tara run down the concourse in those booties (trying to carry all our bags) got me laughing so hard I was snorting. We were trying to get on plane #3. Part of why I love Tara is because she is fun like that...she knows how to laugh at herself! Everybody in the whole airport was watching her because not only were the boots BRIGHT red, and we were laughing obnoxiously, but also she had to shuffle in them since they didn't actually fit her feet. It really was a sight to behold! Thank you Tara for a true escape for "One Crazy Day!"




Now to Mr. Oliver....

He is happy to be back at school with his buddies, teachers and therapists. The routine seems to be really good for him.

Per the IEP, Oliver got a new adaptive chair in his classroom. It is extremely helpful and has made a big difference for him as far as his ability to focus and stay safe. We are hoping to borrow a similar model for our house because it has proven so helpful.

He has had a break from the seizures recently. He had a few no-seizure days strung together earlier this week which is always nice. We take every seizure free day as a gift!

Oliver continues to have trouble with speaking. After I pick him up from preschool I ask him questions: “How was your day Oliver?” silence. “Did you play with your buddies today?” silence. “What did you have for snack today?” silence. “Oliver are you sleepy?” Molk (Milk). OK you want milk? Silence. “Did you play outside today?” “Did you see Miss Sue today?”

And at that point I just sigh and hope another day we'll be able to have some kind of meaningful communication other than “milk.”

We are exploring other options for communication, but so far none have been the magic bullet. This is very hard.

Oliver continues to struggle with constantly mouthing objects. He even broke a Chewy Tube, which is theoretically designed to withstand “chewing” (Andrew points out that Oliver chews with the strength of ten toddlers). We just keep redirecting him and trying to make our home safe. Our current project is to find a way to build something to lock up our knife set and coffee maker, which Oliver can now reach (even in the deepest corner of our counter). And y'all KNOW I have to have coffee. Our ever-amazing handy man Shane is helping us figure all this out. Thank God for him!

Oliver is improving in his ability to navigate our steps. The last few mornings, he has walked down with no help! Praise the Lord! We have waited so long for this! Now if we get him to 100% of the time, this will be one less area to worry about.

Potty training is on hold now until we work out some sippy cup issues. The preschool wants us to focus on getting him to drink out of a regular cup with a straw. We are on our way, but due to Oliver's oral issues this is a big deal. Potty training is waiting until we think he is really ready. Right now it isn't the priority. One step at a time, right?

My goal for potty training is by the age of 4. I have learned that I have to set REALISTIC goals. I have to scale back how fast I think things can be accomplished and give Oliver the time he needs. He is a special boy and sometimes things take significantly longer for him to learn, but he WILL get there. In the meantime, we continue to buy those diapers and keep the changing table in our bedroom (sexy, huh?)

Oliver's behaviors are all over the map. When he is not on behavior meds he is difficult to manage and the teachers/therapist at school have trouble getting him to attend to tasks. When he is on the meds he sleeps a great deal. We are struggling to figure out a “sweet spot” where he isn't wild or asleep. That special place between the two has been elusive. Sigh.

One really cute thing Oliver started to do is to say “baby” when he wants me to hold him. I think I've said “you're my baby” so many times (or some kind of variation) that he now understands that means I'll hold and cuddle him. He usually only wants to be “babied” for 30 seconds, but my heart just melts when he says it! Oh I could eat him up, he is just so darn cute!

Lastly, I'll end with a little story about our neurosurgeon, Dr. Duhaime. That lady means business! In December when we met with her she suggested the VNS for Oliver. Dr. Thiele was uncomfortable with this because it means Oliver's kidneys can't be scanned by MRI. Instead, Oliver's kidneys have to have a CT Scan (which over the years can expose him to a great deal of radiation). Dr. Theile said that is why she doesn't recommend VNS in kids with TSC.

Dr. Duhaime said that Mass General should be able to invent something so kids can have a kidney MRI, even if they have the VNS. She said, “We are the leaders in the medical field. We should be able to make this happen here.” She promised to follow up on it, and she sure did. I like her!

Her PA called and asked for Oliver's measurements the other day. I thought this was out of the blue until she told me it was about the VNS issue. At Mass General's labs they are MAKING something specifically for Oliver, which has never, ever been done before. To have the team at Mass General working on this is extraordinary! The best minds in the world, or as Sharon the PA said, “Some very smart people” are working on this.

Praise God!

Can you imagine how life transforming this could be for so many other children? The way this might change treatment options? It is almost more than I can take, the joy of this possibility.

And here is the lesson to be learned: Even in this hardest of places (of the surgery not working and perhaps making things worse) good things are still happening. God's provision is still abundant. The work continues, and nobody is giving up; not on Oliver, or any other child.

If that doesn't make your heart thankful, what will?

Beauty from ashes...I love it!