Patrick's Birthday extravaganza!

If you haven't seen pictures on facebook by now, you've waited long enough. (And also, I'm sorry for the wait.)
With school starting for Jocelyn and Patrick's relentless schedule and all the celebratory outings, it's been hard to get this blog updated.
On his birthday, we had some chicken and dumplings, made by Mama Kate and ice cream cake. He really enjoyed the dumplings (Patrick is a savory kind of guy) and appeased us by eating a couple tiny bites of the icecream. He got to open a present that sis presented. (a spiderman action figure, which he really likes!)

On the following Saturday, Brian's parents were here and we had another little celebration with the ice cream cake, and we all went out and had our family photos made. Our parents gifted us the costumes as Patrick's birthday present, and our photographer (Adrian McCandless Photography) gifted Patrick the photography session. It was a really special experience.

Then on Sunday we had some special visitors who brought cupcakes and a little party ensued with the kids! Patrick enjoyed a bit of the icing from a cupcake. It was such a full weekend!
We started Jocelyn to first grade last Monday and it's been a whirlwind. I can say with some certainty that Patrick is missing Jocelyn during the daytime hours.
Our final birthday celebration was this weekend. Pat's Aunt Carla and Uncle D sent us out to Balloon Palooza in Grand Prairie to watch the hot air balloons. Jocelyn and Patrick were transfixed and it was a super evening!

The birthday party is done now, but the memories will last forever!
Thanks to everyone who sent cards and sweet little notions. He received everything with gratitude.

Wednesday

It's Wednesday, hump day, about half way through my marathon week. There's not a ton to update you on, but I feel like there is so much to say. So, I'm going to dump it here.
Monday brought our last visit with our home health nurse. It was a sad goodbye but it makes sense. Our home health was only able to answer questions related to the feeding tube and any other thing was out of bounds. Hospice will bring us a nurse who can answer any questions, offer advice, and a dr on call. Though it was sad to let a new friend go so quickly, I already feel like we are being wrapped in the arms of our family with hospice.
Monday afternoon a specialist came to see Jocelyn. She is called a Child Life specialist and her function as I understand it is to help us assess Jocelyn's mental health and offer suggestions as well as memory build for her and Patrick. (I have this tiny twinge of anxiety as I tell you that she could tell I'm a "Pinterest Mom" at her first glance around my home. I'll bet you all sort of think that about me, but I never gave myself such a title. I don't look at my home and think "that's crafty perfect!" But she did. I don't look at my home or my life and think anything is perfect, except the people and the God who dwell with me. Memory building has been in my bones since about the second meeting we had with hospice for Daniel. So I guess if my home looks like I'm building a Wethington Time Capsule, then so be it.)
So I digress, the specialist, whose name is Kelly, and I interviewed one another, feeling each out for expectations and after a satisfactory interview, she played with Jocelyn for about 2 minutes, before she asked me"When did you say you were at the warm place?" When I told her, she said, "that was the only time frame when I interned there that I worked with the little kids. I know this sweet thing's face!" In short, she remembers J's face from the Warm Place and though I'm sure Jocelyn doesn't remember Kelly, it feels a little more like home that we've got someone who "gets us".
Kelly brought a social worker who wants to offer all sorts of services, but it is hard to anticipate what we'll need. One awesome thing she said is that as long as Patrick is safe to go places, (read, the lake, grandparents, vacations) we can work with a pediatric hospice in that local area so we are never more than a call away from care. Hooray!! What a sweet feeling to not be chained at home.
Tuesday was a strange appointment. I completely expected to go there, be told his  wound looks fine, and then leave. But, we got there and the nurse got to work taking his dressing off and showing me how to take the extension (the little tube that delivers food) on and off the button. She felt the fit of the button was tight so she took a little slack off of it, and said she wanted to talk to the surgeon about how much more would be safe. I left completely expecting to pick up Jocelyn from my dear friends' house, but she wasnt ready to come home. So Patrick and I napped and lunched and generally took it easy. Still, when Jocelyn wasn't home by 3 and now I knew to expect her closer to 6 I took us out for a Sonic drink and a little bit of shopping for Jocelyn's school clothes. Plus, Jocelyn has been begging for some time now to have a sit down meal. It's crazy because I really champion that, but for about 2 weeks now, we have just been eating when we are hungry whether or not anyone else is. So I prepared a meal and everyone who was home sat down and ate together, and talked about regular family stuff. And it. felt. normal. The nurse called me back and asked me to come in and let her take a bit more slack off the button.
This morning, Brian worked from home so Jocelyn got to sleep in and Pat and I went to our appointments. The nurse who was planning to help the button be more comfortable decided she really didn't need to do so, which almost made the appointment useless, but there were these two things, we bumped into the surgeon, who looked at Pat and asked me some questions, and then promptly told me to cancel my appointment with him next week. "We just did everything we would have done." he says to me. So boom, an appointment ticked off my calendar with absolutely no effort. Thank you useless nurse appointment. The other thing was this, there was a mother in the waiting room reading with her son. Just like I'd be doing with Jocelyn except, (LOL) they were reading about septic tanks, which from my country upbringing I have limited knowledge of;  I cannot say why I asked a question about the book, but it struck up the loveliest conversation, and whether or not we stay friends forever, or it was just a chance meeting, I needed it. She asked about Patrick and listened intently. She told me her daughter has CP and has a brain injury that rendered her brain incompatible with her body. She asked me how long life is expected for Mito kids, and I told her what I know, and she shared with me that the Doctors told her she'd get something like 7-9 years, but they have celebrated that baby's 10th year. (Ashley if you are reading this, I hope I'm telling your story correctly.) She said every year we get is a "bonus year." And you know what, I think every day we get with Pat is a "bonus day" Not because I expect to loose him at any moment like I did with Danny at the end, but because, I think that is how God wants us to think of life. A bonus day, do something awesome. So, thank you useless nurse appointment. Thank you for a freed up calendar day, and an inspiring visit with a friend who is also in the thick of a messy journey.
Then we scooted over to our EEG appointment in the main hospital. Here's what happened, Patrick had about 4 episodes over the course of an hour. I hope it was enough to let Dr Kayani study. Here's what I learned, when the technician began to wash the residue of the test off of Patrick he began to have episode after episode after episode. (PS, Patrick HATES his hair to be washed. He's been that way since birth.) So now I can say with some certainty that the episodes are mostly triggered by stimulation. So if 4 episodes are not enough to study, we will know how to elicit them if another study is required. But let's keep prayers coming that 4 is enough.
We are home now, vegging in front of the tv with Jocelyn and this Mom is so glad that the next appointments this week are easy.
As an aside, I figured that Friday appointment out >>> Speech therapy is coming to our house to watch us have breakfast.

This week at a glance

When I look at my calendar for this week, I think it looks like a crazy person planned it. There's so much going on and I know you'll want to know about a lot of it.
So here's what I am doing... if I should forget to update you, just let me know and I'll tell you about outcomes.
Today the main event is a specialist who is coming out to help make a plan for Jocelyn's mental and emotional health. We are not going to do much today, just talk about the plan and introduce Jocelyn to the new friend.
Tomorow, Tuesday, I'll take Patrick in so that his wound care drs can have a look at how he is healing. I'm not an expert but I can tell you the wounds look great and seem to be healing well. This is not an appointment I have any concern about, but it is a trip into Dallas.
Wednesday, Patrick's EEG is scheduled. They want to see what his "seizure" or "tick" looks like in the brain activity and they want a baseline. Should we need another in the future, we'll have this to compare it.
Thursday we have our regular physical therapy appointment. This one tires him out, but he seems to like his therapist, Trish, so not a big appointment here.
Friday is funny because I have 10 am marked on that date, but I didnt tell myself what was happening at 10. Silly me, but I bet I have it figured out by Wednesday or Thursday.
That's the plan, We are going to be quite busy, so if I am not responding the way you hoped this week, you'll know it's because I am either, sleeping, driving, meeting or eating. :P

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The Day of Brutal Honesty

Everyone please realize that we needed a day to digest our day before we were able to post the following.

Our appointment yesterday with Neurology was an extremely tough day for both of us, and it was a day that both of us had to know in the back of our mind we might be having one day soon. Dr. Kayani shared with us that when she first met us she had greater hope because of the strength Patrick was still presenting. However, with yesterday's visit she feels that while we are on a different timeline we are still on the same path that Daniel took, unless some medical miracle presents itself. The doctors will never be able to establish a test for God's might, his mercy, nor his love. Further, the hope God gives us is far greater than the hope of this world. We will continue to pray for the life of our dear son, but most of all we pray for comfort and strength in faith for all involved; this is not limited to our immediately family, but also those that surround us in prayer and faith.

It is important to realize that neither the neurologist nor we have given up on finding something to help Patrick. She is still doing her own research in hopes of finding something, anything that might help. We have hit a few roadblocks along the way. There is a drug that is not on the market that the neurologist hoped we would be able to try. It was believed to be in between the trial phases when we first met with her. When a drug is between trial phases they allow patients with the supposed disease it is designed for to use it compassionately. We were unable to get a diagnosis quickly enough for this as the drug will very soon be taken into the third trial and compassionate use has been stopped. It is important to realize that this drug might not have had any impact on the particular type of Mitochondrial Disease Patrick has, but trying something is better than nothing. We want you to know that we are not actively seeking a second opinion, because the next person we would go to is the specialist who treated Daniel. Her name is Dr. Iannaconne, and as she is in the same clinic with Dr. Kayani she has already been consulted.

I have my own research in some other types of treatment that I have been looking into more deeply, but so far most of those options are for a less severe type of Mitochondrial Disease. 

We have not and will not give up on looking for options at this point, but we have come to realize that we also need to prepare to some degree for the path we appear to be on. This means that we had to have a very difficult conversation with Palliative Care yesterday as well. We met with the same man who met with us when we had to make some decisions with Daniel. He asked us if we were ready to move forward with Home Hospice care. I kind of tried to prod him for information of what our other options might be, or if he might have some suggestions for a guidebook on this sort of scenario. Lessie and I both realize we need someone to help Jocelyn process what is going on, and Home Hospice has the perfect service to help with that. We know there are social services that will be necessary to help us get the equipment we need, and again Home Hospice has a great service for that. We know we will need a doctor who is available as necessary and Home hospice also has this need covered. Not only all of this, but all of these roles, except the social services, are being filled by people we know and trust from our previous experiences. The nursing is something we will eventually need as well, and while it seems we are starting Hospice very early, we thought it prudent to make that call. Hospice for children is not the end, as I am sure many of you remember us saying with Daniel. 

Neurology visit tomorrow

We are doing great with the feeding tube and Patrick is already gaining weight! He is more vigorous as he eats at the table as well. On Sunday he seemed very engaging with our church family, so that was fun to see. Even a warmer feeling comes across you as he decides to wave at you when you enter a room.

However, we are dealing with a new set of issues this week. We are seeing this disease progress in Patrick, and it is hard to talk about, but I think it is important to keep you apprised of the situation. On Monday morning I was laying with Patrick in bed. We do this position where I'm lying with my head and back down but my knees are up supporting Pat's back while he sits on my stomach. I noticed that he kept seeming to loose his balance so I sat up and watched him. He seemed to be twitching. So I layed him in the crib and took a video of it to send to neurology. They confirmed my suspicion and fear that Patrick is having little tiny seizures. The good thing is they don't seem to bother him too much. The bad thing is that the disease has begun affecting his brain.

Today after noting the spells again, repeatedly, I called neurology again and they put him on a mild dose of a drug called Kepra. It is to manage the seizures until the time when we can get him in for an EEG. The doctor also asked to move our appointment to earlier in the day so that we can have a little more time to visit.

Also, on Monday our regular pediatrician stopped by to see how we are doing and ask some questions about how he can help support us with his recommendations for therapy. He asked us to think about how Patrick has been developing since the beginning of summer. Together, Brian and I realized that Patrick has lost a lot of head control and is loosing strength in his core (he is no longer rolling from side to side to reach toys.) This is not something we did not know, per se, but as the progression or rather, regression is such a slow process it is important to take inventory occasionally. It's important to realize that to some degree this disease is hitting an acceleration button. But it is very, very hard to take in.