So we have had a crazy busy two weeks my friends! It’s been nonstop with various therapies and doctor appointments. I used to be someone who was so organized and on time, and now I never know what time we have anything #momlife lol. So I thought I’d pop in and update everyone on all of the craziness!
Last week Madison had her yearly re-evaluation for her Early Intervention services. A developmental specialist came to meet with Maddie and tested her on various motor and social skills. In true Maddie form she slept through the session, so it wound up being a lot of me answering questions as to what she can or cannot do. Madison unfortunately still isn’t doing too much on her own, although her strength has improved from a year ago. I’m hoping to add additional services as this year begins since she’s been a little better with her alertness and ability to participate in therapy.
Now that she has been evaluated by the EI team, we’ll need to schedule another evaluation with her specific service coordinator and current therapist, and from there we will come up with new goals and add new services if we feel she would benefit- which her therapist and I already discussed we think she would. Our schedule is so booked these next 2 weeks however that we probably won’t be able to meet until the end of November or early December, meaning any new sessions wouldn’t begin until the new year. So we’ll see what we can come up with! I’d love PT and vision to be more of a regular thing for her, and am also interested in beginning the process to get Madison set up with adaptive equipment, like a stander, so hopefully 2019 will be the year for those kind of strides!
Madison’s New BFF
Last Friday Maddie and I had the privilege of meeting my best friend Erica’s new beautiful baby girl, Elizabeth Margaret, although we all call her Lizzie! And man is she cute! I’m obsessed with her! I’m so used to lugging Maddie around all day and she’s 26 lbs, so to hold this little peanut was like holding nothing! Pure bliss holding a newborn. Lizzie was just so sweet and chill and looks just like her mama! (Sorry Bryan, maybe you and I will get the next ones!) I can’t believe Madison was once that small, smaller even. It’s so hard to remember those days, especially when we were robbed of them so early.
Erica & I have known each other since we were kids. Like little kids. Went to summer camps together. Her grandpas brother was even close friends with my grandpa, and is even my dads godfather. We’ve joked for years that we are some sort of fake cousins. So to hang out with our own daughters was just a very surreal moment. I count myself very lucky to be someone who has always had a large group of extremely close girlfriends. Majority of my friends I’ve known for more than 20 years. And we have literally never stopped hanging out in all that time. So to now be a part of so many huge milestones in each other’s lives; weddings, homes, babies- there is just nothing cooler. It’s such a joy. Seeing our girls together (although they both slept through most of our play date lol) was so special.
Now, I’d be lying if I didn’t admit that it can also be hard for me to see all of my friends starting their beautiful families and living what John & I thought we’d be living. It’s hard to accept how different Madison’s path will be. And how different our path is and will be. It’s hard to see babies half her age already doing so much more than her. I don’t know if that will ever get easier for me. But at the same time it’s so comforting to know that Madison already has a growing support system in her corner. To know that she already has her own group of friends that will grow up cheering her on and being there for her. Because if all of these new babes that we have welcomed into our family of friends over the last year are anything like their parents, they’ll be the loyalest friends Madison could ever ask for. And that’s something I’m so grateful for! So congrats Erica & Bryan! Can’t wait to watch these girls grow up together. ❤️
Lip & Tongue Tie Surgery
Then last Saturday Madison had her lip & tongue tie revised. We discovered she had a severe tie during her first speech therapy session with her new team, which you can read about here. We headed into the city to see Dr. Siegel Saturday morning for our appointment at 1:00. His practice was packed, which was no surprise because he comes highly rated as one of the best surgeons in the area. That meant one thing; waiting. We waited. And waited. And finally got seen around 3:00. The actual procedure took less than a minute. No joke.
He assessed her mouth and agreed that both her top lip and tongue needed to be revised. We went over the surgery, risks (which are pretty minimal), and recovery. Then we all put on our glasses and he used a CO2 laser to release the ties. Maddie cried briefly, but settled down as soon as she was back in our arms! Honestly for us, we’ve seen her go through so much worse that this quick procedure was a piece of cake.
We were taught some simple stretches that need to be done about 5x a day to ensure the ties don’t reconnect, but other than that Madison was free to go and eat like normal. We didn’t see an immediate result, but Tuesday night she finally took her bottle with more ease! A huge weight off our backs, and even though she’s not back to eating how she once was, I think we’re definitely headed back in that direction now that her anatomy is free to move around as it should! Wish us luck!
Maddie’s Not So Scary Halloween Party
Saturday night, even though Madison was a bit cranky from her procedure, we celebrated Halloween with our family. Madison still isn’t able to take part in trick or treating just yet, but hey, we still need a picture of her in her costume right? With so much going on this year, I literally had about a day to make our costumes, so John and I went as Pac Man and Ms. Pac Man, and Maddie was our little red ghost!
We’re not huge Halloween fans to be honest, especially John, so when I’m making costumes I need to make his something super simple to wear, like a T-shirt lol. Last year I made Madison a spaghetti & meatballs costume, I was the bottle of wine, and John was the chef which entailed him wearing an apron and hat. Easy peasy! See photos below!
Even though we were exhausted we had a great time with our siblings and parents! Special thanks to my sister and brother in law for hosting last minute!
Anat Baniel Method
Remember the intensive therapy week I had scheduled for Madison a few months ago? Well, we finally were able to reschedule that! If you don’t remember, Madison was beginning an alternative therapy method called the Anat Baniel Method that focuses on small movements in the hopes of making new neuron connections in her brain and getting her more aware of her own body. Read more about it here!
The intensive week consisted of 2 sessions a day for 5 days, but a few days into it Madison began her battle with extreme constipation and was in far too much pain to participate in the sessions. We wound up having to cancel, and with so many things going on, were literally just able to finally reschedule it for this week! She did well on Monday even though she wasn’t fully awake for the sessions. Unfortunately yesterday we had other therapy sessions to attend, and today we’re heading to CHOP for a neuro appointment, so we’ll resume the intensive sessions tomorrow-Saturday.
I’m hoping she’ll be in good spirits and continue to connect with herself. I’m also curious to see if the ABM practitioner sees any improvement in her fluidity now that she has also been seeing the chiropractor on a regular basis. John and I are all about trying anything and everything that could potentially benefit her development so hopefully all of these things together will get her brain making all of the new connections it needs to function at its best capacity. Fingers crossed!
Lastly, we have a few neuro updates this week. On Monday we met with her current neurologist for our normal touch base. We see him every 3 months, unless something happens that requires a sooner appointment. I’m also in constant contact with her neuro team anyway; as in besties with the Neuro Nurse. We talk on the phone almost every week. I don’t need to leave any info on the answering service anymore because they all know me and Madison at this point.
Anyway, back to her appointment! We went over seizure activity which unfortunately is still pretty consistent. We went 2 weeks in early September where Madison seemed to have minimal to no seizures, but ever since the constipation issues her seizures have been back just as they were before. She’s also teething which can cause breakthrough seizures too. We’re not totally sure why she had a good two weeks, and whether or not she’s experiencing seizures again simply because she is teething again or what.
We decided to adjust her current meds a bit, but aren’t going to be adding anything new at this time since we’d like to see how the ketogenic diet winds up working for her. If you missed my post on the diet, you can read that here. Essentially though we’ll be admitted to CHOP hopefully in January to begin the diet as a part of their program in the hopes of reducing or stopping Madison’s seizures! If the diet works the plan would be to reduce her current meds in the hopes of coming off them completely.
We also discussed next steps if the diet doesn’t work for her. Madison’s current neurologist believes the diet will definitely reduce the number of seizures she’s having, but he also thinks she’ll still need to be on medication. Lower doses yes, but he feels she’ll likely need a combination of the two to have the best shot at seizure control. If the diet doesn’t work however, we would likely try medical marijuana or wean some of the meds she is on, and try adding something new. We’ve already tried CBD with Madison, and unfortunately didn’t see the results we were hoping for, but many epilepsy patients have found good results by adding a little THC. So we’ll see! I’m hopeful for the diet, but I’m glad we have a supportive care team who is ready to try anything to help our girl if needed.
Today we’re heading to CHOP to meet with the director of the Keto program, as she would be Madison’s neurologist during our stay. I’m really curious to see how this second opinion goes and if she has any thoughts about the current medications Madison is on for her infantile spasms. Over the past year I’ve found it so interesting to see the many different view points different specialists, therapists, and doctors have on everything we’re doing with Maddie!
And so that’s been my last few weeks everyone! Talk about busy. Luckily we leave Monday for a week in Florida and we cannot wait! I’m nervous about flying with Madison for the first time, but this trip is much needed. It’s been an extremely exhausting and stressful 16 months and I can’t wait for a week of no therapy, no doctors, no work, just family time in the warm sun. Of course traveling with a special needs child is going to be stressful in itself, but I think it will be worth it. Any tips on flying with a little one and how to pack efficiently? Let me know! I’ll definitely share how I managed to organize all of her medications, special travel necessities and how the trip went once we’re back, but I think I’ll be taking next week off from blogging to enjoy our time together. Follow me on Instagram though for pictures of the fun!
Have a great weekend and a happy Halloween everyone!
November 11, 2018
Kelly. You are doing a magnificent job. It must be difficult and exhausting to face the challenges which are a part of your daily life, but my money is on you. I believe in you and I’m keeping your family in my prayers. xxoo
November 11, 2018
Thank you so much Eileen! We really appreciate that. Everyone’s support definitely helps us get through. Xoxo