Full speed ahead!!!

Full speed ahead...that is our Chase these days! I can barely keep up with him. I honestly rely on help from Aubrianna (my 4 year old) to keep up! She loves helping me be "mommy" and she is in good training to help with our other little blessing due in March 2013.

Chase has been doing amazingly well. He is healthier than he has ever been in his 29 months of life on this earth. He is working hard with his occupational, physical and speech therapists and playing catch up faster than we can keep up with! Aubrianna is also playing a huge role in his development. Now that he feels so good, he is doing everything he can to keep up with her and in doing so is learning more every day.

Our last visit with his GI doctor was to schedule his next colonoscopy. His EC has been in remission since July and we were very hesitant to move forward with another scope since they usually cause him a lot of discomfort and cause more bleeding. Thankfully, she was on track with us and agreed that we would just take the wait and see approach.

The blood pressure problems he was having seem to be better now too. He has in a sense grown into his blood pressure. As a child gets older, the range for their blood pressure goes up. His blood pressure has stayed the same over the last year, but since he has gotten older he has grown into a higher "normal" level. We plan to keep an eye on it, but for now, it is great! He is also doing well with his migraines. After three months of treatment with his medicine, we did have to increase his dose slightly, but he adjusted well to it and is back to having very few of them.

I feel like we are certainly on our way to ending this journey of unknowns and questions and flying full speed ahead, just as Chase is directing us to do. You would never know by looking him that he has endured 9 hospitalizations, over 400 blood draws, almost 200 therapy sessions, EKG's EEG's, MRI's and countless clinic visits, outpatient procedures and tests.  You may could tell by looking at his Daddy, who has turned completely gray headed during the last few years though! Just kidding...it has been rough, but we have never been alone. God brought us along this journey to teach us, counsel us and prepare us for things he has in store for our lives. I could write a book on what the sleepless nights have taught me as a Christian. There have been so many lessons in all of this. In time, every little step of this journey has revealed its purpose to us. We have yet to see what it means as a whole, but we know it is all God's will and we are thankful.

Update

Just wanted to post an update on Chase...the little stinker who is certainly in his terrible two's stage :).  He has been doing great and seems to be learning something new everyday.  We went to the beach in June and since we have been back he has been into everything and talking up a storm!  We are so thankful for his progress as the communication has made things a lot easier. 

He began taking a new medicine for his migraines in late May and the difference is astounding.  He has gone from having migraines daily to only one every couple of weeks or so.  He is sleeping better and seems to feel a lot better.

His EC (eosinophilic colitis), which has been in remission since February, has flared up again.  We don't think it is a terrible flare up since he isn't bleeding as bad as he used to, but it still breaks our heart that it is back.  The good thing is that he doesn't seem to be in any pain with it. 

The doctors had planned to do an admission next week for a sleep study and to cath him for a 24 hour urine collection.  This was for the testing of the pheo (tumor) they believed he had and to try and figure out why he didn't sleep well at night.  Thankfully, the medicine he is on for the migraines has helped him sleep better and caused the sick spells he was having to go away.  We were able to get all of this testing postponed and hopefully we will not have to reschedule :).

We are going to see his GI doc in a few weeks to talk about a plan for his EC.  They are going to schedule another sigmoidoscopy to get an idea of how his body is fighting it.  I pray that he has made progress and will not need any other intervention. 

Birthday Boy!

Our little guy is two!  I think he really enjoyed his birthday celebrations, but is exhausted.  He went down for his nap really easy today which is why I have time to blog about him :). 

He has been doing great the last several weeks and seems to be healthier than ever.  His appetite is about the same, some days good some days bad, but he doesn't seem to be bothered by his colitis.  He hasn't been visibly bleeding over the last few weeks and several hemoccults have been negative.  He is doing well with his therapies and has picked up on some more sounds and signs, making communication easier.  He still gags on most solid foods and swallows things whole, but is more willing to try new things. 

We met with his neurologist this week and got to see his full MRI results.  There were a couple of abnormal spots, but she said these usually didn't mean much.  She said they were caused by lack of oxygen at some point in time, but shouldn't be the cause of his sick spells.  She did confirm with us that she believes he is suffering from migraines with aura.  He began taking a new medicine last week that will hopefully alleviate the migraines.  He is still hypotonic as well, which could explain some of his clumsiness and frequent falls.

He still has some low ferritin levels on his iron profile.  He jerks a lot in his sleep and still wakes every 2 to 3 hours throughout the night.  He has also been having some leg cramps.  She told us all of these things could be related and lead to the migraines.  The new medicine is a bit sedating, so we have been giving it to him at night.  The hope is he will sleep better, which may stop the migraines.  To get his ferritin levels up, we would have to increase his iron doses, but that isn't easy to do since the iron causes his colitis to be worse.  We plan to keep his dose the same for now and see if the new medicine helps. 

They plan to admit him in July for a sleep study and a cath to collect a 24 hour urine.  My hope is the medicine helps him enough between now and then that we can cancel both.  He is also being referred to an opthamologist just to rule out anything with his right eye (he signs to us that it hurts often, which we believe is just part of his migraine.)

Chase is absolutely loving being outside and playing with Aubrianna.  He is climbing on everything and his favorite spot is his sandbox.  We are all looking forward to an upcoming vacation to the beach.  What a huge sandbox he will have then! 

Understanding a little more...

We left Chase's last nephrology appointment in March a little relieved yet a little anxious. It has been difficult in the past to explain to the doctors exactly what is going on with Chase, especially when he cannot communicate with us. We were just telling the doctors what we were observing. Its kind of like when you take your child to the doctor because you know they are really sick and feverish, but by the time you get there the children's Advil has kicked in, they seem perfectly fine and you feel a bit crazy :). However, this time he had a sick "spell" while we were at the appointment and thankfully two doctors were there to witness it. After hanging out for about two hours while they observed him and done a vascular study, they told us that something was wrong, but they didn't know what it was. They assured us it was not life threatening, but said they were going to do some consulting and have us come back in a few weeks with a plan. On Tuesday of this week, we took him back to the children's hospital for the follow-up appointment.

The "spells" Chase has when his blood pressure increases and then falls rapidly vary in length and severity. He seems to have visual disturbances and headaches but is unable to let us know exactly how he feels. We have taught him the sign for "hurt" (using the pain he feels from his colitis) and he signs to us that his head and/or right eye hurts during the spells. He also wants to be held and acts a little dizzy. Sometimes he feels really bad for about an hour and other times we notice him having a spell and he is quickly over it and back to what he was doing.

The diagnosis we got on Tuesday was pheochromocytoma. It is a rare tumor that can be located anywhere in the body although it is most commonly found in the adrenal glands. It causes the release of hormones that conrol heart rate, metabolism and blood pressure. These tumors are almost always benign, meaning they are not cancerous. It is rare for a child his age to have this type of tumor and in children it is even less likely it would be cancerous. They did do a very in depth ultrasound of his kidneys to look for it and did not find it. They told us they are usually very small and hard to find.

The treatment for pheochromocytoma is removal of the tumor, but in order to remove it, you have to find it. They explained to us that finding it is not easy and simple x-ray scans do not locate them easily because of their size. They mentioned the next steps they would take in finding it, none of which are easy. We would be exposing Chase to either nuclear medicine, radiation from scans and/or contrast dyes that are damaging to the kidneys.

Our plan is to watch him closely and journal his episodes and blood pressures. If anything changes about his health, they said they would be very aggressive in treating him. If he continues to do well, they will just watch and monitor him closely.

We are thankful to finally have a piece of the puzzle put together for him. It still seems to me that all of this is connected somehow...his colitis, this tumor and his illness as a newborn. It is just hard for me to imagine why he would have so many rare things going on. It is complex to us, but simple to God. He knows all and created Chase in his image, just as he wanted him to be.

My pastor recently shared a story with me that can put difficult days into perspective. Chase and I recently took part in an Easter play at our church. Chase played the part of Baby Jesus in a scene where Mary was remembering Jesus as a baby. You know---Jesus was a baby, a toddler, a young man...it's sweet to think about how he must have been a silly little toddler and Mary had to run after him during his "terrible twos". Anyway, the story my Pastor shared with me was that a young girl was saved after watching the play. When her family asked her what it was about the play that pricked her heart, she told them it was seeing Baby Jesus. This one little girl's soul may have been the very reason God created Chase and allowed us to take part in the play. You just never know, but isn't the love of God magnificent! We are ALL here for ONE purpose...to tell others about Jesus.  <3

Feeling great!

Our little guy has been doing very well over the last several weeks. He has been loving the outdoors and we are looking forward to a warm weekend to spend outside!

He has had some issues with his colitis, but I have been able to titrate his medicine to help him based upon how he is doing each day. His expressive language is growing almost daily and he has learned a few signs over the last several weeks ("hurt", "eat" and we are working on "drink") making communication easier. He has been very steady on his feet lately and just last week learned to crawl up and down the steps!

He has a follow-up appointment with his nephrologist next week and we should hear from the researchers in the next couple of weeks. It has been such a wonderful blessing watching him grow and learn and feel so good! Giving thanks to My Lord for it all!

Updates

It is hard to say that an infection of c. diff is a good thing, but in Chase's case I would have to call it a blessing. The treatment that he took to get rid of the infection helped him tremendously. While on the medication he ate well and had an amazing appetite. While his good appetite has diminished a bit now, the benefits from the medication to his intestines are still apparent. He seems to be very comfortable and we have hardly seen any blood in the last several weeks. He is also sleeping better, awake only every 3 hours at night and taking a good 3 to 4 hour nap every day.

Thankfully we were able to get some answers as to why he has so much trouble swallowing and why the act of eating is so uncomfortable for him. His OT has worked diligently with him since last summer to teach him that eating is ok. It took us months to get teach him to sit in the high chair and he has shown great progress in his willingness to eat, but his ability to swallow without gagging and to be comfortable while eating somewhat stalled.

The OT ordered a swallow study for Chase and the results showed why. His tongue only moves in the up and down motion which only allows him to pack foods flat in his mouth. He doesn't seem to know how to use his back teeth to grind food and only uses his teeth to bite down without any rotary motions. During the study, he aspirated the liquid and it is presumed with the way he swallows he aspirates the solids too. The doctor did say that Chase has learned to re-clear his airway for the most part, which is why he has not ended up with recurring respiratory infections. His diet has been regressed back to only mashed or aerated foods and liquids can only be through a straw.

It was very hard for me to see this study as I watched on x-ray image how difficult it is for his little body to try and do something that is so easy for most people. At the same time it was such a wonderful blessing.  It allowed me to completely understand what was happening...it all finally made sense! When we left after the procedure, I felt a great sense of empowerment to help Chase. Finally, we had a good solid answer to what was happening and ways to teach him to do better. I can easily compare this experience to my walk as a Christian. Before accepting Christ as my Lord, I had a hard time understanding this life on earth. But since accepting him everything makes sense. I am empowered as a Christian to follow the teachings of God's Holy Word and tell others about Jesus. God leaves no questions unanswered for this journey. His timing is perfect and His love is forever!

A couple of weeks ago, Chase had a speech evaluation and qualified for speech therapy. He has great understanding of what we are saying to him, he just has trouble vocalizing it back to us. They did do another hearing test which he passed - such a blessing! So, we are going to be doing some more signing with him and work on his overall oral motor skills. I am sure he is going to start talking soon and not stop. Then we will be wondering why we ever though we had to "teach" him to talk :).

He has continued to have his spells of dizziness, visual disturbances and watering eyes. His blood pressure has remained elevated as well. I mentioned in previous posts the need for him to start systemic steroid treatment for his colitis. We just didn't feel this was the best treatment plan without first treating his other symptoms as his colitis seems to be in some sort of remission for now. We contacted one of his doctors who agreed. This week he had a visit with his nephrologist, another kidney ultrasound and some more blood work. They really have no answers for us at this point, but we feel they are being very thorough and if there are answers, they will find them. We should know a little more at our follow-up appointment in 4 to 6 weeks.

Our Angel Chase

Finding time to post updates is a little tough with two kiddos, a hubby with two jobs and all the many things that fill our days, but I just wanted to make a quick post as things have been a bit rough lately for Chase.

He has had good days in between, but for the most part he has been sick since Thanksgiving. A series of viral illnesses, RSV and a stomach virus have been hard on him. He is now almost back to the weight he was a year ago. He was hospitalized last week for a stomach virus. He received IV fluids to help correct his electrolytes and was discharged on day 5 of the virus. He continued to have vomiting and diarrhea after we got home, up to 18 stools per day. We done our best to keep him hydrated, but on Sunday he started passing solid pasty stuff in his urine. He went in for a urine culture and stool cultures. His urine is just highly concentrated from the dehydration so we have been pushing even more fluids. We learned last night that one of the cultures came back positive for a C. diff infection in his intestines. His GI doc and PCP believe it is just a testament as to how bad his colon and intestines are, as he does not fit the normal criteria to have this infection. They believe the severity of his eosinophilc colitis and having the virus on top of it lead to the infection.

His immune system is lacking the ability to fight things off right now, but we hope he will soon become stronger. He began a 10 day treatment for the C. diff today. His first dose made him sick, but the pharmacy was so sweet to mix up another compound for us to try and he had no trouble taking it. Because of all of his acute illnesses lately, he has yet to take the high doses of steroids for his EC. The plan was to start them the last week of February, but the new infection will have to be treated first.

Through everything, he continues to smile constantly. Chase doesn't yet talk except for a few words, but he prays all day. He prays when he eats, when I change his diaper and just out of the blue. He doesn't speak...he just looks at us, puts his hands together and closes his eyes. He sits silent while we pray with him and after we pray, he claps his hands. His devotion to Jesus is a lesson for us all. I know he is the child and we are the parents, but this child has taught his parents more than we could ever teach him.