Stroke and The Last Few Weeks

Some Background

I love having my thoughts, feelings and events from Dempsey's crazy first year documented. We went through so much but also saw so many blessings that I might have completely forgotten about. I want to document and share some of the events that have happened in the last few weeks.

Nick's little sister was getting married in early September in Utah and we really wanted to be there. Months ago, Nick made sure to request his rare time off from residency for the week of the wedding. And then for weeks, he jumped through hoops to figure out a way for him to be able to travel to Utah while still being able to return to work with Hawaii's strict travel laws during Covid. Doctors have an exemption to travel that allows them to return to work if they get tested in both locations and have approval from all directions (state, hospital, program, etc). Nick finally figured out a way to make it work and was soo excited. We decided that it might be too risky to travel with Charlie (2 months old) on a 7 hour plane ride during the pandemic (for a trip that would only be a few days) so I stayed home with him while Dempsey went to Utah with Nick. I really really wanted to go and see Riss get married. I was also wanting to see family and be in a place where rules were a little more relaxed. Dempsey had been eager to go to the park. Hawaii's rules have been very strict. We haven't been able to go to the beach or on hikes as a family in a while and the rules keep going back & forth. They had recently enforced yet another "stay at home order" which basically means you can't leave your house except to go to work or buy food. We know several people with young kids who left Hawaii to go stay with family on the mainland while rules were strict here. That idea was tempting to me but Nick has to be here for work and there was no way I was going to fly to Idaho (where my parents and lots of siblings live) by myself with both boys (and again, covid). 

Nick and Dempsey made it to Utah safe. In the airport, Nick ran into a family from Hawaii who were headed to Utah for the reasons mentioned before so it got us thinking.. Dempsey is already on the mainland and it would be pretty simple for me to fly over with Charlie (just a one way flight) with the idea that we would stay there for a while. We had been so caught up with the fact that a short trip with so much airplane time wasn't worth the risk of flying with Charlie that we didn't think of the idea of me and the boys staying longer (while Nick returned to Hawaii for work). If Charlie and I left on Friday, we could make it for the wedding in Utah and then my parents could drive down from Idaho to pick us up! We could spend a month with family (parents, siblings, nieces, nephews), go to the park, see my parent's new house and get some help with the kids. After the wedding, Nick was going to be gone 80 hours a week anyway (12+ hour shifts, 6 days a week + commute time, overnight shifts) so we weren't going to see much of him. We all loved this plan. My parents were excited and onboard. Nick's family helped find a good flight and we booked it! It made so much sense! Dempsey was going to start preschool in a month so now was the time to do it! In the back of my mind, I was still a little worried about the flight with Charlie so I kept praying about the decision. I kept getting a feeling that I shouldn't go but it just made so much sense TO go so I figured it was just me being overly worried about the travel part. I continued to get a feeling that I shouldn't go. More prayers. Here is a text I sent Nick on Wednesday night when the idea first came to us (before we even looked at flights).

Text: "While saying that prayer, I kind of got the feeling I shouldn't go.

I donno. Part of me really wants to but I think the flight home would be too overwhelming.

I'm going back and forth every 30 sec"

The next morning, we booked the flight anyway and I was excited. I had a big "To Do" list for Thursday including a bunch of stuff to prepare for Dempsey's preschool IEP meeting, pay bills, pick up Dempsey's prescription in Honolulu (it usually gets delivered to us but we would need it early for the trip), pack a suitcase, etc. The day was not going well. I got lost in Honolulu and Charlie screamed the entire time which isn't typical. When we got home, Charlie screamed some more and I wasn't able to do anything from my list. I hadn't got much sleep the night before and was exhausted. No bills were payed, nothing was clean and not a thing was packed. I was stressed and kept getting a feeling that I should not go to Utah but it made no sense why. Nick and I both thought I was just stressed about the flight. I sent this text to Nick on Thursday.

Text: "I just keep getting a feeling that I shouldn't go. But then logically it makes sense to go. I just keep getting a feeling so I keep praying about it. Nothing is super direct, just kind of a feeling. And now Charlie is doing this which isn't typical si it feels like it's not supposed to happen"

I was so tired and eventually broke down to tears and told Nick to cancel the flight (it was Thursday night, the flight was for Friday morning). That way there was no hurry to pack or clean or pay bills before the trip. 

The Morning of My Stroke

I woke up the next morning feeling bummed but ready to get stuff done. I sat down on the couch to feed Charlie when I started losing feeling in my left arm. I remember looking at my arm while trying to lift/rotate it but it just felt so heavy. Then the left side of my face started twitching. First my cheek then around my eye and mouth. I could tell it was kind of drooping so I held up my phone camera to see what was going on. It's kind of a blur but somewhere in that time while this was happening, Nick called. I wasn't too worried about my arm (I just taught it fell asleep or something) so I didn't say anything to Nick about it at first but when my face started twitching, I thought that was pretty strange. My face got worse and it was getting hard to talk. I was starting to drool while explaining to Nick what was happening. He was asking lots of questions. He clarified a few times that this was only happening on one side. He was quickly concerned and explained that the only reason I'd be experiencing something like this in both my arm and face on one side was if it was nerve related, that it sounded like typical stroke symptoms. He urged me to call 911. I did not want to do that. My mind seemed to be working fine so I didn't think my symptoms were worthy of a 911 call. I wasn't having trouble coming up with words, I was just having a little trouble physically forming my mouth to say/clearly pronounce words. I didn't know it at the time but it turns out that a memory aid for the basic signs of a stoke is F.A.S.T:

F- Face drooping

A- Arm Weakness

S- Speech Difficulty 

T- Time to call 911

But within 30 min, my face felt almost normal (aside from some stiffness). My arm still felt heavy and it was all very weird so I called my friend Becky to see if she could take me to an Urgent Care or something. In the meantime, I got on a telemedicine visit with a doctor to get an opinion on if I should go to the hospital or not. (I know, I know... Nick is a doctor and already told me I need either call 911 or go the emergency room, not Urgent Care because they won't be able to look at my brain. Side note: It seems pretty common for doctor spouses to want a second medical opinion haha it's just hard to see him as a doctor sometimes!) Sure enough, the doctor on the video call quickly said that I need to go get seen and that I should definitely go to an emergency room, not an urgent care (that's one copay that wasn't necessary haha). But it was what I needed to hear I guess. My arm had started to feel a little better but while getting some things together for Charlie, it seemed to happen again (not as bad this time). I gathered some frozen breastmilk from the freezer and planned to drop Charlie off with Becky so that I could drive to the hospital. Yes, I drove to the hospital which I now know was not smart at all. I reassured Nick, "I'll just use my right hand to drive!" 😆

I arrived at the hospital and noticed quite a few people waiting outside of the ER. I explained what happened and got brought back to a room where the ER doc asked a bunch of questions and did some tests (lift my arms, squeeze his fingers, smile, etc). It had been several hours since the worst of my symptoms at this point; the left side of my face just felt a little stiff and my left arm was still feeling a little heavy but overall better. The doctor talked about how my symptoms sounded like a stroke but I was a young & healthy woman so it would be extremely unlikely. I didn't have any major risk factors like high blood pressure, diabetes, smoking, older age, high cholesterol, genetic history, etc. Sometimes similar neurological symptoms can be related to migraines so I just assumed this was all related to my history of migraines. It was the first time I've had an MRI. I basically just laid down, was covered with blankets and had to wear earplugs. There were all sorts of loud/weird noises and it took longer than I expected. It was hard to stay completely still (I kept focuses on my swallowing and almost laughed out loud when I thought of the Parks and Rec episode with Will Arnett and the MRI blind date 😂) but overall, it was pretty simple. After the MRI, the ER doc came in and told me that there was an abnormality found on my brain but he wanted to consult with the neurologist before confirming anything. He came back a little later and told me that it looks like I had a stroke. I can't recall what all was said, it took a little while to process. The ER doctor was definitely surprised to be telling me this as well. At one point, I started crying while we were talking, I was a little shocked and worried. Basically, when someone has an ischemic stroke blood flow is cut off to part of the brain and some damage is done. The damaged area will light up on an MRI. The doctor showed me the slice of my brain from my MRI results where you can see the area of the stroke. He said that they were going to admit me to do some more testing, make sure I was stable and do their best to ensure it didn't happen again. I had a few minutes to call Nick to let him know what was going on. He too was shocked and emotional. I know that it was definitely really hard on him that he wasn't there for all of this. Not only was I on my own but Charlie didn't have either of us to take care of him. Luckily, we have amazing friends that agreed to watch Charlie overnight while Nick and Dempsey caught the first flight home (and unfortunately, missed the wedding). My awesome parents also hopped on the first flight out to Hawaii to come help out with everything. 

I can't believe that I was almost going to be on an airplane when all of this happened!! I might have had worse effects and if not, I may have brushed it off and never got checked (putting me at risk for a more severe stroke in the future). I am SOO grateful for prayer and spiritual promptings. I also can't believe that I ignored that feeling not to go to Utah so many times before I listened. 

Testing

I was brought up to a room where I'd stay for a few nights. I had to retell the events from that morning what felt like a million times to several different doctors, nurses, therapists, etc. The neurologist was also surprised by my case. He said, "When I heard your story, I thought nnahhh- she couldn't have had a stoke. But then I saw your MRI results." Unfortunately, there is no way to be 100% sure how it happened. A lot of the time, medicine is a bunch of educated guesses so they were going to have to use the process of elimination through testing to get an idea of what caused the stroke. But it was likely a blood clot that found its way to my brain, we just needed to figure out how. He pulled up the image of my brain and said based on the location of the damage (middle of the right side), sure enough he would have predicted drooping on the left side of my face and loss of feeling in my left arm (textbook). I was able to Facetime Nick while talking to the neurologist about next steps and Nick was able to clarify a few medical things that I didn't always understand. They discussed the possibility that this might be early signs of Multiple Sclerosis or something similar rather than a stroke. We made a game plan for the next day:

• A bunch of blood tests to check for
• clotting disorders
• my levels for risks factors (cholesterol, etc)
• see which blood thinner is most effective with my genetics
• CAT scan (to check for abnormalities related to blood flow in my brain )
• Echocardiogram (to make sure blood is pumping through my heart normally)

The next morning, the neurologist came in and said he had been thinking more about my case and wanted to do more testing for Multiple Sclerosis. Even though my symptoms and MRI results lined up with a stroke, I just did not fit the demographic. Therefore, he added another test to the day:

• Another MRI, but this time with contrast. From what he explained, if it was MS then my blood would flow to the damage so with contrast, the surrounding area would light up. But if not, we could conclude it was indeed a stroke. (There is a spinal test as well but he did not feel comfortable with that since I had started blood thinners).

I wasn't able to eat anything until the first few tests were complete. The CT scan was pretty quick (faster than the MRI), they used a dye to look at some of the smaller veins and arteries (that part was super weird and warm). The echo was pretty similar to a standard pregnancy ultrasound, but just looking at my heart instead. They did a bubble test where they inserted air bubbles through my IV and had me cough to see if blood was pumping through my heart normally. The second MRI was similar to the first. They did a standard scan, brought me out and then added the dye to look again. 

I was also started on aspirin and blood thinners which meant that I wouldn't be able to breastfeed Charlie anymore. This was honestly so hard for me. Charlie loves to eat so much and I really enjoyed breastfeeding. It was something I wasn't able to do with Dempsey either because of his own health issues despite a whole lot of efforts and dietary changes. Not only that, but I learned I will likely need to be on aspirin or blood thinners of some sort for the rest of my life so may never be able to breastfeed again. I probably asked the neurologist 5 different times if he was sure there wasn't an option for me to continue breastfeeding right now and he could see I was pretty emotional about it but unfortunately, there wasn't. (Side note: I happened to have some breastmilk saved up in the freezer for Charlie so after the hospital, I was able to feed that to him for a few days. I bawled through the entire last feeding before switching to full formula). Nick also asked if this will affect future pregnancies to which the neurologist said yes. Pregnancy and hormone changes from pregnancy can cause a hyper-coagulable state (abnormally increased tendency toward blood clotting) which is not great for someone with a history of a stroke. He said if we choose to get pregnant again, we will want to talk to a MFM doctor and himself about options. We honestly didn't dive into that topic too much since we need to focus on one thing at a time but that was kind of a bomb to drop. I still don't really know what it will mean moving forward for our family but we will learn more after more followup visits. I'm just trying not to think about it too much.

I had a nice view of Pearl Harbor from my room

I loved getting these pictures of Charlie from our friends while I was at the hospital

Test Results and Some Explanation 

At the end of the day, the neurologist said we had lots to talk about and that we have a better idea of what happened! First, the contrast MRI did not show behavior of MS so we could confidently say I had a stroke. I asked if that was a good thing (it seemed like a good thing to me, that I didn't have the start of a long term illness) but he said not necessarily- a stroke isn't great news either and once you've had one you are at a much higher risk for having another. He also said that it was very interesting because the second MRI revealed a second stroke. There were now 2 damaged spots on my brain (the previous day, there was only one). He was not sure if it had been there all along but the first MRI didn't capture that same "slice" of my brain so the second stroke may have been missed in the image. That lines up with the flare ups I seemed to have the previous morning. Or I had another stroke since the first one. I didn't have any terribly obvious symptoms during my hospital stay so I didn't feel that was likely. Either way, we needed to figure how to prevent it from happening again. The echo revealed that I have a pretty significant PFO, which is a hole in my heart. It's actually pretty common and 20% of the population have it (Dempsey has one). However, the size of the hole can vary. It's generally not a problem... unless you are prone to blood clots. If blood flows properly though your heart, it moves to the rest of your body. Most likely, a clot would get caught somewhere like your leg. It's very very rare but if you have a clot and a hole in your heart, then the clot could travel through the hole and up to your brain (without the rest of your body acting as a "filter"). That is what they think happened to me. Where did the clot come from? We don't know. As mentioned before, pregnancy can cause an abnormally increased tendency toward blood clotting. I was just over 2 months postpartum so this was a thought but that's pretty far out from both my pregnancy and my surgery (c-section) so it's not an obvious answer. In fact, I chatted with my OBGYN a little bit after I got discharged and he seemed to think it was too far after the pregnancy/c-section for it to be related but the neurologist thinks it was. 🤷We are also testing my blood to see if I have any sort of clotting disorder. Those results can take a few weeks so I will learn more at my neurology followup. 

We also discussed the option of getting a procedure to close the hole in my heart since I'm now at a greater risk for a stroke (it wouldn't be an open heart surgery, it would be through a vein up to my heart). That decision will depend on my blood test results (if I have a clotting disorder, I'll need to be on a stronger medication anyway so it might not make sense to risk a procedure). I'm kind of hoping to get the procedure so that I don't have to worry about a clot moving through the hole every time I lift something up or exert energy in any way. It would just kind of bring some peace of mind but we'll see. 

Learning that I have a PFO meant they wanted to do an ultrasound of my legs to make sure I didn't have a clot hanging out in there before I went home. Unfortunately it was too late in the day to do that evening so I had to stay for another night (even though I was excited to see Nick, Dempsey, Charlie and my parents). No clot was found in my legs the next day so I got to head home. 

I've been feeling a lot better and am just taking it one day at a time. I am incredibly lucky that I don't have any major long term side effects, it could have been soooo much worse. I'm slowly getting back to all my normal physical activities but was instructed to take my time. It took a few days for the stiffness in my face and arm to completely go away. It's hard to describe but the only remaining difference is a slightly duller feeling in my left arm (Nick will test me by touching both arms, the left one can fully feel the touch it's just not as tickly). I'm also just feeling sooo tired. Not sure if it's the aftermath from the stroke, a noted side effect of the medication or the mental stress. It's probably a combination of everything. I'm just ready to have a plan for moving forward!

Basically, it's been a crazy couple of weeks, months and years. Residency is rough. Residency + a kid with special needs is rough. Residency + a kid with special needs + newborn + c-section recovery is rough. Residency + a kid with special needs + newborn + c-section recovery + stroke is like SERIOUSLY? (And did I mention that Nick has gallstones and needs surgery soon?) It's hard to not get frustrated with life sometimes but I'm sooo grateful for family and friends that we can lean on during hard times. I have learned so much about service from the people in my life through their help. I'm soo thankful for spiritual promptings and prayer. I still can't believe how everything happened over the last few weeks. It's pretty cool that technology allowed me to look back on texts and see what I was feeling and saying at that time (before the stroke) and not just relying on memory. The feeling to stay here was not a coincidence.  I'm also incredibly grateful for the kind words and prayers from so many people. It means more than you could know! 

We got to watch Riss and Colton's ring ceremony virtually

Finally home with my baby boy. Dempsey was napping when Nick took this picture but I was so happy to see them all!

The Signing Time Concert & Dempsey's Progress

Signing Time Concert

Dempsey’s speech has been one of the biggest delays that we’ve seen so far. Up until a week or 2 ago, he only verbalized 5-10 words (Mama, Dada, Dempsey, Ball, Hi, Bye) and wasn’t stringing 2 words together. That’s pretty behind for a 2.5 year old. For reference, the Mayo Clinic says... 

Between the ages of 2 and 3, most children:

• Speak in two- and three-word phrases or sentences 
• Use at least 200 words and as many as 1,000 words 
• State their first name 
• Refer to themselves with pronouns (I, me, my or mine)
• Can be understood most of the time by family or close friends 

Developmental delay (including speech) is definitely one of the more common trends among those with KBG syndrome and on top of that Dempsey has some hearing loss. But we realized that his delay was primarily physical. He seems to understand a lot of what we say to him and sign language has been AMAZING. When we were still in Colorado, Dempsey’s therapist recommended the Signing Time videos. We have a monthly subscription to the app which teaches basic signs in a fun way (mostly songs). We primarily watch Baby Signing Time because a lot of 2 year olds don’t have the fine motor skills to shape their fingers for more advanced signs. We’ve been watching them for a while now and have all learned so much! Dempsey has been able to communicate with us in the last year so much better than he would have been able to without it! I know we definitely have avoided some communication-related tantrums. I recently counted up that he knows over 100 signs!! It’s been so fun to see him progress and grow his signing vocabulary.

Earlier this year, we learned that Rachel Coleman (the creator of Signing Time) was hosting a free concert for kids with special needs in February. (How cool is that?) It was awesome. We learned that she just happened to be coming on vacation to the island and reached out to Dempsey’s Hearing Specialist to see if there were kids/families on the island that would be interested in a free concert. So basically, her family took the time out of their vacation to do this for free. Rachel and her husband have two daughters. The oldest, Leah, is deaf and is a huge part of the signing time videos that Dempsey watches. They also have a younger daughter with special needs. Rachel’s husband ran the electronics at the concert and Leah (who was so little in the videos, but is now in college) participated as well! Nick, Dempsey and I loved the experience. And Nick and I have talked about how cool it was to be in a room full of children (and families of children) with special needs. There were children with Down Syndrome, autism, hearing loss, and other rare syndromes like Dempsey's. Everyone there had been through so much. There was such a sweet spirit in the room. We have both said that it almost made us emotional, just the feeling of the room. It was such a relaxed environment, full of love. Almost immediately, there were kids just running up to Rachel in the middle of a song to give her a big hug. A few songs into the concert, kids were wandering up to the front of the room. For the first time, we didn’t worry about having to chase our kid down. All of the families and parents had this mutual understanding that “hey, it’s okay if we let our kids wander and enjoy this”. Dempsey loved getting to hear the songs that he was already so familiar with, though I don’t think he can fully appreciate how cool it was for him to get to be there. Rachel and Leah took the time after the concert to meet every single person that wanted to meet them.

I honestly think all of the TV that Dempsey’s been watching during this quarantine has strangely helped his speech haha. In the last 2 weeks, he has tried verbalizing SO much more (like Grandma, Grandpa, play, Mickey, Pete, and new ones every day)! He’s even trying to string words together!

I put together a video of Dempsey doing a good chunk of his most-used signs. There are about 80 of them here (excuse my mom voice saying “Can you sign…?” and “Good Job” a million times:

Nick, Dempsey and I with Rachel and Leah

Rachel singing to Dempsey

Dempsey signing along to a song

Dempsey’s Progress

Dempsey has come such a long way since getting his diagnosis in July 2018. He is now a little over 2.5 years old. We are currently down to this list of doctors/therapists:

Genetics- Dempsey will probably always check in with a geneticist regularly for the rest of his life to get updated on new information about KBG syndrome. We continue to learn a bunch about his syndrome from the KBG Facebook group, though we find the comments and questions on that page to be a little overwhelming at times.

Dempsey in his KBG Foundation shirt

Audiology- Continually checking on his mild conductive hearing loss. No changes since his diagnosis last year. He still wears a Cochlear Baha everyday (he has gotten very used to it and even asks for it sometimes). He can generally hear what we are saying when he isn’t wearing it but the clarity/volume is improved with the hearing aid. (I like to best compare his hearing loss to someone who requires mild prescription glasses. They can still see without them, the glasses just bring clarity). And at his age, hearing every aspect of a word is so important to his speech development. If he is able to catch up and his hearing loss doesn't worsen, he may not need the hearing aid forever. There is also a chance that as he grows and his bones/ear structure change, his hearing may improve. If not, he may need an implant or different type of hearing aid as we learn more. Either way, we are so grateful for technology that can help him out.

Right after Dempsey got his hearing aid

ENT- Goes hand-in-hand with some of the hearing loss. His tubes are still intact so we follow-up every few months to check on those as well.

Ophthalmology- He gets seen by the Ophthalmologist pretty often to check on his eyesight, ptosis and strabismus. The two surgeries that he got on his eyes last year seemed to be really successful. He still had some wandering and required patching for a few months. We would patch his left eye to help strengthen his right eye. (Basically, if one eye wanders more than the other, it doesn’t get as good of a picture so the brain will start to ignore the image coming from the weaker eye. So the weak eye can become even weaker until the brain ignores that image completely. To avoid becoming blind in the weak eye, we patch the strong eye to force the brain to use the image from the weak eye). Dempsey wasn't the biggest fan of the patch and it was rare for him to wear it the whole time he was supposed to. Luckily, we don’t have to patch right now but the doctor said she might have us start again anytime in the future if needed.

Right before Dempsey’s ptosis surgery

On the way home from the ptosis surgery, sound asleep (he couldn’t close his eyes for months and still sleeps with his eyes open a lot)

Wide open eyes! As they started healing

More open-eyed sleeping

There were several months where almost every picture I have of him is like this (eyes crossed from the strabismus)

Right before his strabismus surgery, this was the first time that we were able to go back with him for anesthesia

On the way home from the strabismus surgery

Endocrinology- Dempsey started seeing an Endocrinologist when we moved to Hawaii regarding the short stature associated with KBG syndrome. He also has had several x-rays that showed that his long arm and leg bones are still disproportionate (rhizomelic shortening), which is why they guessed he had dwarfism when I was pregnant with him. Those with KBG Syndrome are several inches shorter than the average height so many use growth hormones. Dempsey has always been below the charted percentiles for height and weight. He started growth hormone therapy a few months ago. He gets a shot at home every day and handles it like a champ (he did not like it at first, but after a week it was old news haha). It’s hard to tell if it’s the medicine or a regular growth spurt but he seems to be growing like a weed the past few weeks! Even with growth hormones, he likely won’t reach average male height. We will see! Obviously, short stature is not a life or death symptom but can cause some pain and health issues with the joints and bones if not improved. There are very few and rare side effects to the medication so after hearing our options, we felt very comfortable following the doctor’s recommendation to start it for Dempsey (as long as he tolerated the daily shots, which he barely notices now).

Developmental & Behavioral Specialist- We’ve only met with this doctor once recently (it took a looonnnng time to get in to see him) but it was very helpful! He may be the most helpful and thorough doctor Dempsey's had since we moved to Hawaii. He’s going to look into getting Dempsey some additional direct speech therapy through Kapi'olani Children’s Hospital.

Occupational Therapy- Still working with an OT through Early Interventions on various things (areas that he has fallen behind the benchmarks for his age).

Speech Therapy- As mentioned above, this has been the biggest delay that we’ve seen so far. But we meet with a speech therapist almost every week.

Hearing Specialist- Also through Early Interventions. Gives us great advice regarding his hearing aid, future schooling and keeps us informed about events for kids with hearing loss (like the Signing Time concert)! We've been discussing preschool because when he turns 3, he will transfer from Early Interventions to the department of education. Can you believe Dempsey will start preschool soon? He might qualify for a special classroom with other kids that have hearing loss at a school in the town next to us. We will spend the summer in various meetings with the DEO to figure out the best fit for him, but we're hoping he can get in there.

Neurology- Not a specialist that we have to see regularly but since seizures are very common among KBGers and could start at any age, it’s definitely always on our radar. Fortunately there have been no seizures yet!

Pediatrician- Mostly just the usual stuff :)

That means we’ve been able to ease up a ton on GI and Cardiology! Regardless, Dempsey still keeps me pretty busy with weekly therapies and frequent specialist visits but he is happy and healthy! He's grown used to being able to play outside every day and goes crazy when it's raining. Luckily no cold weather to fight against! We are still learning and adjusting to what life is like with a kid with KBG Syndrome. We are so grateful for the people in our lives that help us. We are still traumatized by his newborn experience so we are pretty anxious about having another newborn in our home this summer. Dempsey can't wait to be a big brother (we think haha). Wish us luck!