This past weekend, we went down to my parent's house in Illinois. It's about a 45 minute drive. And wouldn't you know, Noah started one of his vomiting episodes. We thought we could help him control it a bit but then he wouldn't keep ANYTHING down and started vomiting every 2 to 5 minutes. So we decided that it was time to leave and take him to Childrens. We were already out to lunch with my family so instead of going back to their house to pack our stuff, we knew it was more important to take him straight to Childrens. We are bout half way there (we had just got in to Racine County) when we checked his O2 tank level. Of course it was on the last bit of oxygen, so we called his home care nurse and she told us to pull over and call for an ambulance. They were there in less than 5 minutes and took us straight to the Childrens ER. When we get there, they did their assessment and had some nurses try for an IV. My.least.favorite.part. NO success... even after 10? tries! THEN they wanted to draw blood for blood work... HELLO!!!! He is dehydrated!!! If you can't get an IV, what makes you think you are going to get blood?!?! Meanwhile, a doctor from the ICU came down and said that they already have a room for him but that they are just waiting for the ER people to finish their routine. FIVE HOURS LATER... they FINALLY decide to take us up to his room. **sigh** My poor sweet boy had absolutely NO reserve left but they still kept trying to get blood. I was getting so frustrated. By this time he was ready to take his sippy cup again and because they were not able to get an IV, they gave us the okay to let him drink. He kept it down with a little help from Zophran... I had NEVER seen him drink so fast! They let him have an adult sized hospital bed so that Aaron or I could snuggle with him. I think that having one of use with him in bed actually helped him get better faster. So we went through the whole routine of getting him back on his regular pediasure feedings.. it only took a day and a half to get him on full strength feeds. The day before we were discharged, one of the GI doctors came up to talk to us about these spells that he keeps having. They suspect that he not only has dysodonomia (sp?) where his nervous system is out of whack, but also has a condition called sicklet (sp?) vomiting where he has stress induced migraines that cause him to vomit uncontrollably. There are meds that they can give him to help control it but these meds can effect his heart so they would need his cardiologist's approval. They told us that the next time he has one of these spells again, to bring him in for blood work.

So, over all, he was only inpatient from Saturday to Tuesday. He has since then been his normal happy stinker self. I just wish these spells would stay away but I am pretty sure this is something we will have to deal with for a while.

Noah turned the mighty "Two" yesterday!!! I still can not believe how the first two years have flew by. And I am pretty sure I don't have to say it, but his first 2 years were amazing, scary, fun, sad, unforgettable, heart breaking, miracle filled, covered in prayer and held in God's ever capable hands. Yesterday, Aaron and I were looking at old videos and photos... basically starting with his birth photos and working our way to the present. I teared up quite a few times. Both for the scary moments and the moments when God gave us another miracle to hang tightly to. Each and every milestone (and now repeated milestones) are treasured and never forgotten. In a way, his struggles have been a blessing to me... I say that because I have grown in Christ more now than ever before but also because I know I look at life differently and know how important it is to cherish those moments ... even the little everyday things.

Noah has had a total of 6 major surgeries. Two of them were life saving. I still have a hard time wrapping my head around that fact. Noah is a miracle. There is no better word for him. I thank Jesus for every second I have with Noah. I thank Him for the miracles. We are so blessed that God chose US to be his parents!

Now for a quick update because it is late and I am tired.

Noah had botox injections today to correct the foot drop. He received a total of four injections. Then we go in next Thursday to have his foot casted. He will have to have his foot re-casted once a week to achieve full range of motion again and it could take up to 8 weeks to correct. Then he will have a brace to wear at night so as to prevent it from returning. The doctors believe the foot drop was caused from his cardiac arrest. Next week I will start posting photos of the serial casting progress.

Thank you all for keeping us in your prayers! Love the Solomon's :)

OHHH!! I almost forgot!!!! Noah's birthday party in going to be July 9th from 2pm to 5pm. You all are welcome to stop by and see how my little man is doing!!!
The party will be held at:
Smolenski Park
438 S Stuart Rd
Racine, WI 53406

I only have 17 days left before Noah turns 2! Time really flies.

We are still not in our apartment yet. Lots of things keep happening to prevent us from moving in. It is getting really frustrating. We have waited so long. I want to cry most days.

Last week, we all were in Michigan for my cousin's wedding. Noah decided that vacation was the perfect time to visit another hospital! Yup... he vomited himself into dehydration. The Bronson Hospital in Kalamazoo only kept him for a night. He was let out just in time to go to the wedding. Silly stinker! Then the day we left to come back home, my grandparents took us to the Binder Park Zoo. AWESOME zoo!!! I love it there! I could stay out in "Africa" with the giraffes ALL day! Noah actually was brave enough to reach out and pet it's nose while I fed it. SO cool!

Now we are back "home". Two days ago, I decided that it was time to start switching Noah's drip feeds to bolus during the day. So far so good! I am so happy about that! I really hope we can get him to 3 bolus' during the day and shorten the run time on them so as to create the feeling of hunger more so that he will actually drink/eat by mouth. Pretty soon we will be able to start giving Noah breaks from his O2. Slowly he is getting more freedom.

I am sick once again. I feel horrible. I really hope Noah does not catch what I have... It is getting difficult to stay away from him when all he wants to do is "eat" my eyelashes... Yes... that is his new obsession with my eyelashes. He likes me to bat my lashes on his lips. Sometimes he will even close his lips on my lashes and pull back. Such a silly boy :)

Please pray for my health to return. For our apartment to be ready to move into this week! For Noah's continued progress. Thank you!

This past week has been a hectic one. Noah had been going through one of his vomiting spells... only, this time, it lasted a bit longer than normal. He has lost a lot of weight as well. He lost 13 ounces this last week. He is actually under his weight that he was before he was admitted back in October. When he was discharged on February 23rd, he weighed close to 21 lbs... He now weighs 18 lbs 1 oz. He has become so thin. I have been getting so frustrated with the team that has been "helping" me with his weight progress. But we seem to finally have a game plan. I will say that this past week, Noah has become even more active, therefore is using up the calories he does get. If he does not start gaining .. or even maintaining a weight, that they will need him to be re-admitted for failure to thrive. That is exactly what he does NOT need! He needs to be home and STAY home! Noah was also started on a new med to eliminate this pattern of vomit spells he has. One of the side effects of this med is that it can make you hungry. Those are the 2 reasons he was started on it. And today it seems to be kicking in! he has been on it for a week and last night, he actually ATE! BY MOUTH! PLEASE PLEASE PLEASE... pray that his body keeps responding the way it is and that we can fatten him up!

In other news... Aaron and I are waiting on the Lord to FINALLY open the door to our place! It is coming soon!

A nasty bought of sickness has made it's rounds in our household over the past couple of weeks. Noah and I have had respiratory crud a few weeks ago that is taking it's sweet time to leave. Then a few days ago, I caught a stomach virus from somewhere (I have NO clue where!) that lasted for 24 hours and left me 8 pounds lighter and with less energy. Then it made it's way to poor little Lorali (Noah's cousin from SC) who didn't have it as long as I did but passed it to Aaron and Ami, my sister-in-law, and then on to CJ (Noah's other SC cousin) who is still feeling yucky today. This is their last day here before they drive back to SC this afternoon. :( I am going to miss having them here... I just wish this visit wasn't so yucky. So far, it seems to have skipped over Noah... I guess that flu shot he got has prevented it. Thank you, Lord!

On top of Noah's respiratory illness, he has not gained any weight in over 3 weeks. In fact, he has consistently lost weight every week. It is really frustrating and I can not help but feel like I am failing to see what we are doing wrong. I know I shouldn't feel that way... no need to reassure me of this, but it is just how I feel and it is because I am a mother. A mother of a special little boy. A mother of a miracle. Noah IS a miracle... God has proven that time, and time again. So, when I start feeling like a failure, I need to remember ALL what life has thrown at Noah and he has overcome it all. He keeps on trucking along. He keeps fighting. I am so blessed to have him and to be his mother.

Noah is a LOT more mobile. He rolls EVERYWHERE and gets into EVERYTHING! He has also learned how to throw a toddler tantrum :) I (secretly) am absolutely LOVING it too! I wouldn't have it any other way! He deserves to throw fits :)... for a little while at least. HA!

He has been so sweet on me. He loves to give me Eskimo kisses and regular sloppy kisses all the time! He still plays with my eyelashes when he is tired and falling asleep. He likes to pet my face and give me the sweetest smile. Then he becomes a stinker and starts smacking me... also while giving me the sweetest smile. My late Grandma Pownell would call them "love taps" :) He does love me. And I love him.

Noah's second birthday is creeping up on me. I can not believe we are about to have a TWO year old! June 22nd! Wow....

Until next update, praying you all are enjoying the Spring and are healthy! Thank you for the continued prayers... we are always in need of them and are so very grateful.

Noah had a long day up at Childrens for clinic visits. He was seen by ENT, GI, Pulmonary, and Speech... in other words, CHOWDA (Childrens Hospital Of Wisconsin Digestive and Airway clinic). For ENT he had a scope done to look at his vocal cords. Compared to his last scope done when he was inpatient, his vocal cords have greatly improved and are working great with no gaps! For GI, he received a new g-tube design. Hoping this new design keeps him from leaking so bad. It is also more flush with his belly so it does not stick out so far... MUCH nicer! He is also being started on a new med that triggers the nerves in his stomach to expand the size of his stomach. This is being started to help with the vomiting pattern that he seems to have but also to kick start his appetite. For pulmonary, we discussed his breathing and about his O2 use. She told us that she wants us to wait till June before we start giving him breaks from it during the day. She said that as he gets trunk strength back that his breathing will get better, lessening his need for additional O2. So I am thinking about a year more of him being on oxygen. He will be getting an airway study done within the next 2 to 3 weeks as well as a swallow study for Speech. What a LONG day it was. All in all, it was a good clinical visit.

I am totally ready for the weather to warm and the sun to come out. It will sure help Noah and I feel better. We are both sick with some kind of cold/sinus infection. We are miserable. Noah is on a 10 day antibiotic. Pray that Aaron stays healthy.
Noah has been home for a month and a half now. His strength is slowly starting to come back. He can sit up unassisted again, but gets tired after about 30 minutes and then starts to lay down again. He is so silly too. He loves music and loves to dance to it. It is so fun to watch him "dance".
He is still on a continuous drip for feeds. We are working on adjusting it so he can have breaks throughout the day so he can have a little more freedom to roll around.
The Diazapam is almost half done with its ween. He is doing good with it coming off. Next month we go in to have Noah's botox and serial casting started on his right foot. Praying that it will help him.

I can't believe that I will have a TWO YEAR OLD in 2 1/2 months! I need to start planing his party :)

Please continue to pray for our health to return quickly. Thank you.