Feeding therapy

It was a fairly slow end of the week last week. Ben had a field trip to the pumpkin patch and loved it.

On Sunday all 7 of us went to the pumpkin patch. It was a HUGE patch with over 50 activities. The kids had so much fun. Eli got to go on a barrel train ride, a horse tire swing, and played in the corn pit. He also got to pick out his very own pumpkin! It got warmer than expected and the day really wore him out alot. He spent the rest of the evening sleeping.

Monday was a very slow quiet day!
Tuesday Jace had his appt with the developmental/behavioral psychologist. It was just alot of basic information and discussions. She is getting to know Jace and then will work to formulate a plan that will be the best. Currently she will be focusing on his physical aggression and his eating issues.
Last night Eli had what appeared to be a 3 to 5 min seizure with O2 sat drop. Makes for a fun start to the evening. His neuro has been called and deciding if they want to make any changes.
Benjamin also had his appt with the feeding team today. He did pretty well. They said he is definitely malnourished and are wanting to start him on vitamins as well as a few other things. The OT also wants to get a full sensory diet started for Ben. They will be working in conjunction with his doctor and psychologist. We are hoping to find a good solution for Ben when it comes to nutrition. He is so darned tiny.

Tonight is our ASL class. It's fall parties tonight for us and for the kids. They are super excited to get to wear their costumes. We have made cheesecake bites for our class. I can't wait to try them.

Tomorrow is Emily's 11th birthday. Since there is no school tomorrow she took her treats today. This weekend my parents will be in town to celebrate her birthday!

Today is Ben's Parent/Teacher conference, and tomorrow is Emily, Jace, and Ari! So nobody has school for the rest of the week. Hoping to get some housework and pumpkin carving done! Pictures and updates soon.

Wants

Tuesday afternoon Eli's respiratory therapist came and downloaded his apnea monitor and O2 sat monitor information. She was going to fax it to the pulmnologist /sleep medicine doctor, Dr B, before we saw him Wednesday morning. She called me saying that it was over 100 pages and that she was going to drop it off for us to hand carry to the doc. I looked over it and was shocked by what all I saw.
Wednesday we had Dr B first thing. He went over the report and initially wondered if some of the high heart rate issues were because of a malfunction, some of the HR's all the way up to 370. There were also some low heart rates and quite a few apnea episodes. He got to going over the entire report as well as Eli's meds and was concerned. Eli is way maxed out on his robanol and that can cause high heart rate. With Eli's heart problems they are taking it seriously. He is calling his cardiologist and they will be doing an EKG and Echo. I received a call today from Eli's respiratory therapist saying that she met with the pulmonologist and they went thru all of the printouts AGAIN and that they do NOT believe it's a problem with the machine. I've heard them say that multiple times now but I keep hoping that it's a malfunction. But after hrs of pouring over it they are sure it's not. He also is concerned about the amount of issues he's having with his mask. He sent orders to the RT to work on refitting that. He has also ordered a special bed that will keep Eli elevated and on his back. We also discussed the ferratin / iron levels and he has decided with as much problems as Eli is having with his legs and arms that it would be a good idea to start iron. We are again hitting another crossroads. Lungs are a primary function obviously and we are stuck. The medication that is helping to protect his lungs (and is working pretty well mind you) is now causing another primary organ (the heart) to suffer. I have no idea what is going to happen and I'm left simply having to trust the doctors that they know what the right choice is.

Then come afternoon time we met with Eli's new optometrist. His eyes have again gotten worse. The optic nerve and retina still look good, but the eye sight has changed. What the doc was concerned could happen, has. Eli's right eye is barely functioning and his left eye is trying to do all of the work to make up for it. He has ordered new glasses and has also decided to begin patching. Eli will start with patching 2 hrs a day and we can work up from there. They will continue to monitor his eyes closely for any new changes.

After that we ran by and picked up his new SMO's. These are braces that cover his feet and right above his ankles. They are hoping that we can work up to the point where he wears them all the time he's awake, except for when he's upright working on PT he will continue to wear his AFO's. The AFO's are the ones that cover his foot, ankle, and leg to right under his knee. Hopefully we will begin to see some changes with these.
He's worked a bit more with his walker and is slowly getting the hang of how it works. He just doesn't have the strength or endurance to keep up with it.
He's been incredibly exhausted today and is already back down for another nap.

We are here. Scared and exhausted. This isn't our first time to have unwanted side effects from a medication BUT it is our 1st time to have 2 primary systems effected by the choices that we have to make on this one. I trust Eli's doctors, mostly, but when it comes to something like this it's hard to trust anyone, hard to make a choice if we compromise the lungs or the heart. I don't want to compromise anything. I want a magic fix. I want it now.

I WANT A CURE.

Therapy changes

Eli had a fairly quite morning. Bob and I got some grocery shopping done and a few errands. This afternoon Eli had therapy. It was PT, ST, and ASL. We had a long talk. Alot of discussion about his legs and walking abilities. Nobody is sure what the best course is. His in home leads will be changing. His ASL therapist will become the lead. Then his ST will come maybe twice a month to work on his IPAD for communication. Then he will have OT and PT in home. We have been going to 2 different therapy centers to get all of his therapies as well as working with in home. It has gotten to be to much. Eli struggles with that much and so do we. We have decided to stop 1 therapy center where he was getting all 3 therapies and switch to simply in home. He will still receive intensive PT and water therapy at 1 outpatient facility. His in home PT agrees that some of the physical issues are getting worse BUT she believes if we weren't doing the intense therapies and interventions that it would be considerably worse than it already is. That's rough to hear. She worked with him for a bit today in his hip helpers and in his AFO's and he really struggled with exhaustion. They wear him out so quickly. He did do a bit of work on the stairs and did well with that.

It has been a bit of a struggle to decided to lessen Eli's therapies. There is a slight guilt over not giving him every single thing out there. On the other hand he is exhausted and it puts an added strain on his body. We are trying to find the balance of giving Eli what he needs, but also allowing him to be a kid and have a large amount of down time. Eli is already sleeping so much, and already needing so much more energy. He sleeps 12 hrs a night and around 4 hrs a day. For a total of 16hrs a day. Mind you there are only 24 hrs in a day, meaning he is only awake for about 8hrs max. So it's hard to find time to fit in all of the other activities. We are hoping that we are making the best choices. We have chatted with so many of his docs and therapists and they all agree. It's not giving up, but it's allowing Eli a break. It's realizing that no matter how many therapy opportunities we provide he simply won't catch up. He won't reach all of the milestones that we have been pushing him so hard to reach. I'm sure to some that this sounds like giving up, but I promise you it's not. It's about loving our little man unconditionally and allowing him to be simply Eli. We are hoping this is the right choice, because we don't see many other options and we truly believe this is for the best.

Emily came home today with big news today! They had a school spirit assembly and she won an award. She made principal's honor roll. She was super excited and so are we!

Tomorrow we have Eli's ASL tutor who comes once a week to teach us ASL. We enjoy this time and learn a lot.

Something's up with Tiny

I'm constantly reminded of the pain and devastation and heartache and instability of Mito. My little man reminds me, as well as the other little Mito warriors in our group. It's so hard.
My tiny man has had a rougher few days. He's had his cough, and has had some blood sugar instability. Today he ran a fever again (highest we've seen for a few weeks) as well as had some blood sugar drops. He has a bright red rash on his cheeks and has been very sleepy. Yesterday he had a lot of drainage, but today that is gone. Some upper respiratory crackles but nothing down in his lungs. Not sure which way it's going to go but it's definitely been getting progressively worse over the last few weeks. This week we meet with his pulmonologist /sleep study doctor and I'm anxious for that. I'm hoping we can find some relief for the restless leg syndrome and for the breathing issues. His Mito doc AND his endocrinologist don't believe that the growth hormone is causing the increase in issues, BUT his pulmonologist and pediatrician believe that it is. His Mito doc doesn't sugar coat anything and he simply feels it the progression of the disease. I hear docs say that but I struggle so very much to believe it...to grasp it. I'm tired of hearing it. I can't give up and I wish they wouldn't give up. Any way you look at it, this is a major appt and we are ready to get some solutions for the sleeping issues. It's so hard for a kiddo who already has energy issues to struggle so deeply with sleep, it makes the energy ten-folds worse.
We also will be making some phone calls this week to change around a few meds as well as to rework his feeds. He's still swelling quite a bit, and waking up many a morning with a very swollen face. Hoping to get some answers on that as well.

Emily is super busy this week. She's got to be at school early every day to help run the united way fundraiser. It's also spirit week at school and since she's part of student counsel she is actively involved in that as well.
Jace is going to hopefully be meeting with his doc. He again lost a lot of weight this week and we can't go like this much longer.
Ben has his 1st field trip this week to the pumpkin patch. He's excited to get to go.
Ari enjoys every week of school!

Tomorrow is Bob's birthday! We are hoping to have a nice quite family evening at home. We went to the farmers market this last weekend so we have a lot of fresh yummy veggies to make up this week!

Please keep some of our Mito kiddos in your prayers. There are a few in the hospital right now who are really struggling. Please pray for them, their families, and their doctors!!!

Garage Sale and updates

Again. I feel like I keep falling so far behind. Last saturday we had a garage sale. The kids set up a table and sold "Muffins for Mito". They did well and enjoyed spreading awareness about Mito and their little brother.
The week started with a rough Monday. My little man had his renal ultrasounds and his appt with the surgeon. His kidneys look the same, a touch larger, but not scary bad. His surgeon is still not comfortable operating and is also not comfortable stopping the antibiotics. Eli has been on them since 3 days old and will probably be on them for a long time to come. They are helping prevent infection, although they do cause some risks as well. The surgeon was concerned though about his testicle surgery. The left one has already tried to go back up and has shrunk considerably. The right still can't be palpated although we know it's there from pictures at the last surgery. He is afraid to try and re-operate on the left as he's afraid touching it will cause it to break off. He does however want to operate on the right. He wants to go in and attempt to pull it down. He isn't confident however that it is salvageable at this point after being inside Eli's body that always runs hot because of his autonomic issues. He will either remove it or lower it. He's hoping it's still partially good as Eli needs those hormones since his pituitary gland isn't functioning. We shall see. He has scheduled the surgery for January 3rd. He wants all the other docs contacted so they can join in and combine under his anesthesia. Eli can only be under so long so we will back to prioritizing surgeries. Something we have had to do many times before. He will as always reserve a bed, and we will have a full sit down with anesthesia beforehand.

On Tuesday Eli had the orthopedic surgeon. &%^#$*&%$#*....that is how I felt about it. She says his hips are good BUT his bones are improperly shaped at the hip AND knee, that his hypotonia is causing major issues AND that his achilles tendon is way to tight, BUT walking isn't important for a kid like him and we can just worry about it when he's older or he can just learn to compensate for it. I fired her and DEMANDED a new doc. I told her that just because he has mito that he deserves EVERY opportunity to do basic life skills like walking. I have NEVER been so angry at a doctor. It was clearly not a good experience.

Eli had PT on Wednesday. This was his 1st time going into the heated therapy pool. The first and last time that we took Eli swimming he had alot of issues maintaining his body temp so we never took him back. He did great in the therapy pool and after a bit really seemed to enjoy the water. He will try again in a few weeks.

Today we again had the garage sale. The kids didn't have school so they got to help out. They again did their Muffins for Mito. They did amazing! Towards the end of the day they had 1 muffin left. We saw a man chatting with them. Next thing we know he is walking up to us, muffin in hand. He talks to us about how Emily told him about Mito and Eli. He said how strong we must be, and how he was thinking about us and would be praying for us. He told us to stay strong. He said he couldn't donate much but he gave the kids some money. When we walked up to Emily she was crying. The man had given her $100 for 1 muffin. Bob walked across the street and thanked the man even more than we had originally. The man cried and chatted with Bob for a bit. We are forever amazed by the people we have met along this road. In 2 days our kiddos sold 10 dozen muffins and earned $190 for the UMDF and Eli's medical care! We are super proud of them!!

Alot of changes have been going on around our household this week. We are prioritizing and reorganizing. Some things are having to come to an end and some things are being added. The stress level has hit the critical point. We are beyond exhausted and so is Eli. We are having to end some things that we didn't want to end. It's been a long road coming and we've had to really talk and decide what is best for all of us.

Eli has struggled a bit today, his allergies are again flaring up. He's been coughing quite a bit which has resulted in alot of gagging and dropping of his sats. This next week he meets with his Sleep Medicine Doc/Pulmonologist. We will hopefully be working out a better plan for Eli's BiPAP and sleeping issues, as well as the restless leg syndrome, and a full plan for his upcoming surgery. We are also hoping to get this last round of genetic testing back. He has an appt with his endocrine doc coming up, alot of phone calls with docs for his upcoming surgery, and some very long talks with his hematologist to discuss how we want to handle this surgery and the risk of clots with Eli.

Emily ~ She's staying busy. She has turned into quite the advocate, event coordinator and fundraiser. She is working hard with her Mito awareness, has been actively involved in student council and has been selected to help run the United Way campaign at their school this week, as well as all of the fundraising for her trip later this school year. She's also still enjoying choir, strings and everything else!

Jace ~ He's finishing up his 1st book for book club. They meet next week. He's been involved with the good news club at school and is enjoying that. He's enjoying his ASL class and is learning alot!

Ben ~ He's been a mess. We just finally got his meds back up to a full dose so we are hoping that helps. He's enjoying school, mostly. He's working hard in speech and some extra social skills help. He's also going to ASL class and seems to be learning some.

Ari ~ She's loving school. She has made some friends and is so excited when she gets there each day to sit with them and chat. We've been struggling some still with getting her to eat, but constantly trying new things to see if we can work thru that.

Bob and I are same as always. Like I said above we are really adjusting some things in our life. We have been working out a minimum of 3 times a week, which normally ends up around 6 times a week. I've lost 16lbs at this point, and am enjoying getting back into a workout routine.

More updates soon. I will also try to get a few pictures up soon. Tomorrow Bob and I are going on a date morning. We are heading to the farmers market and to a health and wellness fair. In the afternoon we are hoping to take the oldest 4 out to the park. We will see how the day goes!

Quick Update

It's been a slow week, which was very much needed.
Eli's allergies have been causing him some issues, which has caused the choking & gagging to come back. Finally got orders from his doctor today and we are going to try and double his allergy meds as well as continuing with the spray. Next step will be to either find a new allergy med, add another one, or to up his meds that help keep his secretions low. We shall see. He had his ASL playgroup again today and fell and hit his head fairly hard. He's doing ok so far, so that's good. He also is apparently allergic to something at playgroup and has a rash all over his hands and face. Not sure what it is.

The others are doing well. Tonight we are going to the oldest 3's school for a Family Bingo night. The kids are excited about that.

More updates later this weekend.

Quick Check In

Eli has had a rough day. His allergies are getting worse and worse. He's choking and gagging more. The side of his face is now swollen and he's pulling on his ear. Low grade fever and slightly elevated heart rate. I spent the entire day talking with docs. Endocrine and pulmonology both want to see him ASAP. Pulm got his labs back. His iron was high and his feratin (protein in iron) was low. They aren't sure what's up with that or what to do about it at this point. He has been incredibly clingy all day. With him being sick the rest of his body is attempting to keep up. His blood sugars have been low today so that's taking some adjusting.

Emily is doing well. She had student counsel today, and has continued to stay busy with choir and strings. She has all A's and is doing good with her studies.

Jace is doing super. His new meds are AMAZING. We are shocked by how he's been. He's calm and quiet, and respectful and has been super focused on his work and everything. We are curious for parent teacher conferences to see how he's doing in school.

Ben is doing a bit better. We are going to be raising his meds back up to a full dose, and hopefully that takes this last bit of issue away. He's eating decent, although still struggling with his weight. School is still reporting some attention issues, but working to come up with a better plan. His new IEP is in place and we are super happy with it. He has even more than we had hoped for!

Ari is ok. She's enjoying school, and making some friends there. She's enjoying having her little "homework" backpack, which is a book to bring home and share with the family. She's still struggling with eating at home, and trying to find her place with her siblings. Alot of defiance. Hoping as she's in school that she settles in more.

We started all of our ASL classes last week. The kids enjoyed them. Ari isn't able to go, and we aren't sure if Ben is going to be able to handle going, but Emily and Jace will definitely continue. Bob and I enjoyed the adult class as well and feel like we will learn alot.

More updates over the next few days as I get more information on what's going on / what we will change/do with little man.