Blended diet

So, the blended diet is amazing but it has it's challenges. Of course, the benefits outweigh the downfalls. It takes a lot of work for me to maintain Simons balanced diet. I have to make sure he gets a variety of vitamins and minerals as well as getting enough calories in a day to gain weight so his doctors in Madison don't try to use his weight loss to force me to use that nasty formula. Simon is having to adjust to digesting all these raw foods which makes his gassy at times and therefor fussy but he is throwing up less and no longer has diarrheal since we started whole foods. If anyone knows of low volume but high calorie foods that I can add it his blend, let me know. 

My faith has been shaken

A month ago, we took Simon to Mexico to see a Doctor specializing in homeopathic and stem cell therapies. It was scary at first to think that we were going to trust a doctor in a foreign country to help our son, especially in Tijuana. The Lord totally provided us with the opportunity, means, and peace about the decision though. So, off we went on this new journey.

What we found out in Mexico was astonishing. Dr. Calzada knew things about Simon that had  never been identified or addressed. One look at Simon's blood showed us that Simon was not breaking down the formula properly, leaving him with plaque build up in his blood along with yeast and other unwanted things. The explanations provided to us made so much sense and the most amazing part is that Dr. Calzada was actually willing to provide us with results, rather than just more bad news.

When we left Mexico, we left with a plan of attack and a guarantee that Simon would walk, talk, and eat like any other child. Nothing that we brought home for Simon has any side effects because it's all natural. He is doing oral stem cells from the umbilical cord of cattle, some homeopathic drops twice a day and we add colostrum to his food to build his immunity.

Since we have returned, Simon's development has exploded. We are also changing his diet. The doctor in Mexico doesn't believe that Simon's formula was helpful to his brain development and overall health and he encouraged us to take the scary plunge and do a blenderized diet. So, we have started that this week. In one day, his energy, and his urine output has increased. His mood is better too. We are only in the beginning stages and hope to have him on all whole foods by next Monday. In order to do this, we need a Vitamix so we are in the process of getting that ordered through a special program for Medically needy children. If we qualify, we will get a blender for FREE but for sure, it will be a reduced rate.

Ok, so that's Simon. Now with Gracie we have found out that the Miralax she was put on 3 years ago by her doctor was not good for her either. It should not be used by anyone under 17 and never longer than 7 days. They have had her on it for 3 years and never told me the risks. I was told it had no side effects and was harmless. I don't consider the slowing of brain development to be no big deal. So, needless to say, I took her off of it and changed her diet as well and she is doing so much better too. She has more energy and is communicating better, which I never thought possible. She just doesn't seem as "foggy" and she is still having bowel movements once a day.

So, yes, I have lost faith in the medical system that is supposed to help and protect us and instead thinks it ok to pump us full of drugs and not give us all the pertinent information. I am no longer willing to take them at their word. I don't care how much schooling they have had. I am skeptical and no longer willing to believe that America has the best healthcare plan for me and my family. I received much better diagnosis and solutions from a tiny doctor's office in Mexico. We received personal, intimate, and Christian medical treatment.

Be careful. Don't assume anything. Look into stuff and see things for what they really are, even your healthcare.

Nap is too much to ask

Can anyone tell me how my son can be totally exhausted at 10 am and yet, when I put him down at 11am, he is wide awake. He plays and talks in his crib for over an hour. Finally I give him 15 more minutes before I am going to finally accept that my monster is not going to nap. He falls asleep 10 minutes into my wait. Of course now, it's time for him to eat so I must hook his feeding tube up and try not to wake him. If I would have fed him after his afternoon feed, he would have still played and then napped until 5 and been up until 10pm. Ugh! 

He is lucky he's so cute!

More than I can handle

Well, yesterday was a long and exhausting day in Madison, both physically and emotionally. On top of Simon enduring 3 shots, a blood draw, and x-rays; we met with his geneticist. The good news is that they found another child with a documented case similar to Simons genetic disorder. Simon has 20 extra genes on his XQ22. This other boy has fewer but the ones that he does have, Simon has too. Which means that Simon will likely have the same "symptoms" as this other boy plus other affects as well. So Simon already presents with feeding issues, and muscle weakness. This other boy and Simon share developmental delays and small heads due to lack of brain development. They expect that Simon will have seizures, autism, and intellectual disability (mental retardation). 

His challenges are going to be physical and mental and although we have been through so much physically with him, I was hoping to avoid mental issues. It is so extremely hard to know that my child will have to struggle in this world, even more than I anticipated. I just want to protect him from the cruel ness of this world and right now I am still in the anger stage. I just want to take the pain he will endure in his little life. 

I feel alone, although I know so many go through this all over the world. I feel like I don't want anyone to know because I want to protect myself from the hurtful and insensitive comments people make at times like this. I know people mean well but a mother looking at this future doesn't want to hear that it will be alright, or you never know, things could change. No one just mourns with you, they want to fix something that can't be fixed. Which is the hardest part as a mother, I CANT FIX IT! I can take him to therapy and help him but there is no cure. Oh, and yes, I know that God can do miracles but I also know that it is not God's plan for everyone to be "normal". This may be the path that God has for us and our son and that realization is going to take a lot of time and faith to wrap my head around. 

God is our strength and I am so thankful He can be my Comforter too. He doesn't downplay my feelings or make me feel like my fears aren't real. He just stands next to me and holds me while whispering encouragement to me. Tis more than I handle, alone, so I expect this to grow my faith.

Choking!

Well, last night Gracie was sucking on a piece of hard candy and in the blink of an eye I turn around and while my back is turned, I hear this weird noise. I turn around and see Gracie grabbing her neck. I was holding Simon so I threw him at David who thankfully caught him and proceeded to do the Heimlich Maneuver. One squeeze and she popped it out. Wow! That was scary and she is traumatized to the point where I don't know if she'll ever eat hard candy again. LOL

Well, a lot has gone on since our last post. In my last post, I was excited about Simon's swallowing and interest in food. We have had a few good days since but many more bad than good days, unfortunately. He has lost interest in spoon feeding and has little interest for the cup now too. To top it off, he has pneumonia now too that is more than likely from drinking from the cup.

He has been gaining weight well but now he that he is sick, he has been losing weight now. He was up to 18 pounds 17 ounces but is now back down to 18 pounds 11 ounces. It seems like everytime he has great weight gain he gets sick and ends up going backwards and then it's so hard to get that forward momentum again. So, lets hope he's done losing and we can pick the weight back up quickly.

This has been a rough week for Simon. He has started to pop 7 teeth through and is working on getting those all the way through. He also has a double ear infection and now, pneumonia. So, he's been a bit cranky and not sleeping the greatest which means I am not sleeping the greatest.

I feel so bad for my baby. As his mother, I want nothing more than for him to be happy and healthy. He has had so many struggles. He never seems to catch a break. I feel guilty. I feel guilty because if he's suffering so God can teach me patience and to trust in him, well, that's just not fair. I so want my son to be healthy for a whole month. A whole month of no extra doctors appointments. A whole month without antibiotics or pain killers. A whole month of nice weight gain. He deserves a break.

Eating Rehab

So, we have had a great day for Simon and his eating. He was weighed today and has gained 13 oz. in the last 2 weeks so he is now 17 pounds 15 ounces. The other good news is that he has drank about an ounce of fresh milk mixed with cereal by a cup today. He needs his milk thickened but he is doing really well as swallowing it. :) Let's hope he continues to progress and that his swallow continues to improve.

Finally growing, hopefully!

Well, it was worth a try and it worked! We took away Simon's first feed and moved it to the end of the day, at Midnight and he hasn't thrown up since. Apparently he had too many hormones and stuff in the morning when he first woke up that made him nauseaus when we fed him. The only bad part is that now I have to get up at Midnight to feed him. He sleeps threw it though, which is a blessing.

He has not only stopped throwing up but we were also able to increase his volume and caloric intake every day. He is at 30k/cal per ounce now and up to 130ml's every feeding and holding it all down. I expect a good weight gain when we weigh in next week. :)

New Feeding Plan

Well, I don't feel like the plan that GI posed today makes much sense but we will give anything a try. It seems like Simon's worst feed of the day is his first feed at 6am. They proposed that he is having a surge of hormones that early and it makes him nauseaus. They recommend that we skip that first feed and move it to the end. So instead of starting at 6am and ending at 9pm, we will start at 9am and end at 12am. This means one more time getting up in the night but if it helps him gain weight, I will give it a whirl. He has lost weight again so it's very important that we figure something out. Our goal is to help him gain weight without having him hooked up to his feeding tube all the time. We want him to maintain bolus feeds so that he has times off the pump to continue to work on his development in other areas, such as mobility. I don't think this plan will work but let's give it a shot. :)

Carrots

Ok, Simon ate 1/4 of a jar of baby food today, carrots to be exact. At two different times, he ate several spoonful of carrots and actually swallowed it. This may seem small but this is HUGE for Simon. It's the most he has ever been able to eat in one day. I hope this is a step forward and as he eats more, we need to pray that his digestive system can handle the foods.

Insurance

Well' it has only taken 2 months and 2 weeks but I finally got the insurance issue resolved. It has taken this long to get Simon enrolled in Tricare and his name changed on his MA. It's a little thing but it means a lot to us to be able to call the pharmacy and use his new name. :)

Gotta get a new plan

Simon is currently fed through a g-tube straight into his stomach because he has a weak swallow and occasionally swallows down the wrong tube, as well. Well, his feeds haven't been and still aren't going well. Even though he had the Nissen to stop him from throwing up he is now throwing up through the Nissen. It is taking him one to two hours to keep just over 4 ounces down, 6 times a day. He is not gaining weight and we are having to consider other options. We will meet with his GI doctor on Tuesday to talk about some options. The option that is being discussed, so far, is to place a g/j-tube. The g-tube goes into his stomach and the j-tube goes into his small intestine. This would mean he would be hooked up to his tube and eating more often though, which may impede on his other developmental issues and milestones.

We'll keep you posted on what we decide.

Catch up

David and I have been fortunate enough to adopt 2 amazing children together. Gracelynn, who is now 4 and Simon, who is now 1. Both of these two children have medical issues that making caring for them a challenge.
When Gracelynn came to us at 5 months old, she had suffered severe head injuries which has left her with seizures and motor functioning issues. Her motor functioning has led to delays in both fine and gross motor skills. She frequents therapy for OT and PT, as well as her neurologist for neuro monitoring and her pediatrician for growth and development concerns.
Simon came to us at 3 months old as a failure to thrive baby weighing only 7 pounds and having many medical issues. He was born with cleft lip and pallet and a genetic disorder that he is writing the book for, since no one else has his genetic abnormalities. After months of fighting with him to eat orally and struggles to gain weight, he received a g-tube for feeding. At the same time, he had a Nissen (sp?) which wrapped his stomach around his esophagus, to keep him from throwing up his food, in hopes he would be able to gain weight, between the two procedures. Simon is also very delayed developmentally in every area (speech, fine motor, and gross motor). He receives OT, PT, speech, and eating therapy every week. He has had 9 surgeries so far and several hospitalizations for failure to thrive.
Currently, we are running to 5 therapies a week' between the two kids and receiving one therapy in-home. Simon is being monitored by 12 doctors who deal with his growth, asthma, genetics, cleft pallet, audiology, eyes, allergies, and other typical baby stuff. Gracie is seeing a therapist to deal with adoption and the loss of her birth family as well, right now. She was just tested for ADD and that was negative but that's when we were informed of her motor delays and neurological concerns.
We are blessed to have these gifts from God but overwhelmed at times with their needs. We need and desire the support of many. Prayer goes a long way but often physical help is also required. Our current struggles seem to be to find a person that can watch our children in our home, who can deal with their needs.