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This blog is moving to a new location that better represents our future.

http://www.thewilltosee.com/

We have created the Will to see to be the new home for the blog and to hold all of the info we are discovering about Will's vision. I will be blogging there now and building out that site. Please look there for us. Thanks for following us.

Icky stomach flu

The stomach flu hit our house this week, well at least Jack and I had it. Will might have had a mild version earlier in the week (fingers crossed that he doesn’t get the one that we had) and so far Jim has managed to avoid it. It is really difficult to clean up your child’s vomit when you are nauseous too. (sorry to be so graphic, but anyone who has experienced that will understand). I think we gave it to our friend Karen, so sorry sweetie, hope you are doing better.



So my week of playing catch up became a week of recovering. Oh well, maybe we needed to slow down and spend all of Thursday watching an entire season of America’s Next Top Model. Jack was rooting for Samantha. :)

Worst week ever

I can safely say that last week was the worst week of my life. I spent today recovering from a nice but tiring weekend in Lodi for Granny’s funeral and memorial service. Saturday was an emotional but wonderful day. It was nice to have all of the family together, since it is harder to get all of us in one spot at the same time these days. In true Lange style we buried Granny (just as we did with Grandpa) and completely filled in the hole with Grandpa’s shovel. The memorial service at First Untied Methodist Church was a moving tribute to her, full of tears and laughter. She would have just loved seeing all of her old MYFers (Methodist Youth Fellowship) get up and sing for her.

It will take a long time to sink in that she is gone. She was such a big part of my life, since I grew up right next door. As we were getting ready to leave yesterday I thought we need to go say good bye to Granny. I wonder how long it will take us to stop calling it Granny’s house. She touched so many people’s lives. We will miss her everyday.

As if loosing my granny and tests at Children’s Hospital weren’t enough, getting William’s vision diagnosis was devastating. Jim asked me on Friday, “when do you think we will look at him and not be sad?” We are trying to learn as much as we can about this condition and understand the anatomy and how the eye works. It is overwhelming to think that he might not be able to see very well. We all take the sense of sight for granted, since it is so critical to everyday life. I just hope that he is able to see enough to not be limited by it.

Here is to a better week this week.

A new normal

During a really long week of tests we have gotten good news and some concerning news. First the good, all of the results that we have received from the tests at Children’s have been normal. We are still waiting on the biopsy and pH probe results.

Today we had Will’s eye doctor appointment to check his nystagmus. She has diagnosed him with Ocular Albinism, which means he has decreased pigment in his eye (mainly retna) which leads to decreased visual acuity. Nystagmus, the side to side eye movements he has, is a sign of this condition as well.

She tested his vision, which isn’t easy with a baby and he can see, but his vision is below normal for his age. He is not to light sensitive, which is good and he has pigment in his iris. So the hope is that he will have a mild to moderate version of this condition. Unfortunately we will not know what his vision will end up like until his is at least 2 or 3.

We are still learning about this condition and what it will mean for him. If he has a mild case then he could have normal or close to normal vision. If he ends up with a severe case he could be legally blind. The doctor thinks he will fall in the middle of the spectrum. She has referred us to another eye doctor to confirm this diagnosis.

Here are a couple of links to some information that we have found so far. As we find out more information we will post it.
http://www.albinism.org/faq/children.html#Anchor-What-52467
http://www.aapos.org/displaycommon.cfm?an=1&subarticlenbr=62

Needless to say we both are having difficulty processing all of this and what it will mean for him. We are hoping and praying that he will be on the mild end of the spectrum to give him the most opportunities. As Jim put it, this is our new normal.

As if Will knew that we needed some hope, he rolled over today. And yesterday the 2nd tooth poked through. He is just an angel.

Two busy days

Yesterday morning we left our house for Seattle Children’s Hospital and returned home this afternoon after an endoscopy, pH probe, upper GI and appointment with a feeding specialist. It was a busy two days and we are all very tired. Needless to say you don’t get much sleep when you are in a hospital, but add on to that sharing a room with a family who has an infant and there is even less. Yes, they double up infants. It doesn’t make sense to me either, but that is how it works. Will was able to sleep through the night with everything going on: another baby in the room, nurses in and out checking his vitals every four hours and our roommate’s TV on all night. He is a little super star.

He started off with an endoscopy yesterday morning at 8:45. For this procedure they put him to sleep and then stick a camera down his throat to look at his esophagus, stomach and upper small intestines. They also take tissue samples in all the areas to make sure there isn’t anything going on that they can’t assess visually. The doctor came out with photos (Jim joked that we should frame Jack’s and Will’s next to each other and play pick out your stomach) and said that everything looked normal. He didn’t see any signs of irritation or concern. The tissue sample results will be back in 1-2 weeks.

While they were finishing up the endoscopy they place the pH probe for the 24 hour observation period. It is a probe on the end of a thin tube that sits in his esophagus and measures the pH. If there is any acid left in Will’s tummy when he refluxes or spits up it will register a lower pH. I kept notes on when I he eats, sleeps, spits up, or has any signs of distress. We had to stay at the hospital overnight while it was in, just in case he pulls it out then they can put it right back in.

This morning we did the upper GI, which looks at the anatomy of his esophagus, stomach and upper small intestine. They feed him a bottle barium solution (flavored with cherry syrup) and watch on a fluoroscope as it flows down to his stomach. Pictures are taken every so often, as he is moved into different positions (left side, stomach, right side). He didn’t really like this one very much. All of his anatomy looked normal, so that is good.

The last thing we did today was meet with our feeding specialist. We chatted for a bit and she watched Will feed. She suggested we start using Simply Thick to thicken his formula instead of rice cereal, because the cereal has been clogging the nipples. So far it seems to be working better. She also advised to let him tell us when he is finished feeding and for right now not to start solids. We will check in with her next week to see if we should come back over again.

Overall Will handled all that we have put him through like a champ. Even with all of this stuff he ate a bit better the last few days. The thickening formula seems to be helping, so fingers crossed it will keep getting better.

You may be wondering what Jack was doing during all this. Well we lucked out and had two wonderful people to stay with him, thanks guys. Yesterday my aunt Amy watched him in the morning. Jack got to go wake Riley up and show Amy what a good swimmer he is. Jim came home about lunch time and then they both came over to have dinner with Will and I at the hospital last night. Today Jack’s godfather Alan came over to play. They watched movie and played Hit and Run, one of Jack’s favorite backyard games.

In loving memory

Oneta Lee Hunter Lange passed away this morning at the age of 87 after a courageous fight with Alzheimer’s disease. She was in the home she loved with her four children by her side. She was known as many things, but to me (and many others) she was Granny. Her legacy will be carried on by her four children and their spouses, her eight grandchildren and their spouses and her five great grandchildren. She was the matriarch of our family and a strong presence in Lodi. When her children where young she lead the youth group at Lodi First Untied Methodist Church and will always be remembered for the amazing ice cream socials they put on. As a member of the Hutchins Street Square Foundation Board she helped shape the creation of Hutchins Street Square into the community center and outstanding facility it is today.

She called me SariAnn and I will forever be able to hear her saying that. When I was growing up she used to watch my cousins, sister and I on Fridays and she would make Yuck Soup with everything in the fridge. She was a master at scrapbooking before it was popular and she would play solitare in her kitchen everyday. She taught me to arrange flowers and wrap presents. Undoubtedly she will be most remembered for her pies and specifically her pie crust. Luckily my sister learned the special techniques and will carry on that legacy.

I am so happy that she got to know three of her great grandchildren, unfortunately the two newest ones were to little and her disease at progressed to much to make a true impression on her. Just three weeks ago she was sitting in my parent’s living room talking with me and holding William. I will hold that memory deep in my heart along with many others. We will all miss her and life will not be the same without her.

We love you Granny.

Overfeeding Theory

Well we met with the 2nd GI specialist on Friday. While we like him better, for his compassion to our situation and his overall demeanor, he didn’t provide any more insight into what could be going on. Both GI docs believe that we could be overfeeding William and urged us very strongly to do on demand feedings. We have been doing on demand feedings since his volume has dropped down. I just don’t buy that everything going on with him is because he is just getting full; which is what they are suggesting.

He has dropped his volume in half and he cries or winces in pain when he is burping or right afterward. He also tries to take a couple of sucks and then cries out. My mommy instinct is telling me this isn’t just “overfeeding.” I think there is something going on in his throat. Either there is still some stomach acid left after all the medicines he is on or he is just bothered by the act of refluxing. The last one is a theory that the new GI doc suggested as a possibility yesterday. I had never thought of that one, but it could make sense.

We have decided to add a pH probe to his battery of tests next week, which means we will be spending Monday night at Children’s Hospital. I am not excited about that prospect, but it is what we need to do. During his endoscopy they will place a pH probe in this esophagus to measure the pH changes as he refluxes throughout a 24 hour period. Normally this is done when children are off of their reflux meds, but we are doing it with him on his. We already know he refluxes, we want to know if there is any acid left to bother him when he does.

All of the doctors we have spoken with so far are insistent that there is no way there is any acid left in his stomach, but that assumes that we all have the same amount of stomach acid. If there is acid left we can assume that it is still bothering him and that he is just really sensitive to it, just like Jack. We will just see what the tests show.

Still cute

I said to Will the other day, “You sure are lucky you are cute, because otherwise we would have sent you back by now.” Through all that we have been through so far he is maintaining is cute little personality. No one can make him smile and laugh like his daddy. It is extremely difficult to capture on film tho. He gets a bit of stage fright, which my mom says is what I did when I was little. It is the complete opposite of Jack and cousin Oliver who are total hams in front of the camera. Maybe that will come when he is a bit older. So I thought I would share one of the few photos we have of him smiling and almost looking at the camera.

Each day Jim and I have to look for the hope and today I showed him this photo and said this is the hope for today.

Doctors, procedures and appointments, Oh My!

It has been a busy day so far. This morning we had our appointment with GI at Children’s Hospital and I would say it was productive. While he didn’t provide answers to all of our questions he did agree that scheduling some procedures to rule things out was a good idea. So here is William’s schedule for the next few weeks.

8/14 – Appointment with a 2nd GI doctor for a 2nd opinion (with the consent of our GI doc).

8/17 – Endoscopy at Children’s Hospital – yes he has to be put to sleep for this one, but we don’t have to stay overnight. They will stick a camera down his throat and see what they can in his esophagus, stomach and upper small intestines. They will take biopsies of tissue in all locations to make sure there isn’t anything going on.

8/18 – am – Upper GI study – William will have to drink the Barium bottle and then they watch the flow of the liquid down his esophagus and into his stomach and small intestines.
pm – 1st appointment with the Occupational Therapy (OTPT) feeding specialist at Children’s Hospital.

8/20 – Appointment with an eye doctor to make sure his eye movements are normal.

9/3 – Follow-up appointment with 1st GI doctor.

9/8 – Swallow study – to make sure Will is not aspirating his food as he eats.

Oh yah and Jack has a dentist appointment on Friday too.

All of this stuff may end up being overkill, but we just want to be thorough in ruling things out or finding something. With Jack we felt like we fiddled around and waited to long to do some of these things and it may have made a difference in his outcome. If Will ends up with a feeding tube after everything we just want to make sure that we tried all we could and in a timely fashion to try to head it off.

To give you an idea when we did stuff with Jack he had an Upper GI at 2.5 weeks old (that is how we discovered his reflux, because both boys are pretty much silent refluxers – meaning they don’t spit up a ton), a Swallow Study at 4 months old (3 months into feeding issues) and an Endoscopy at 6 months (he already had a feeding tube by this point).

All of these results may prove to be normal, but at least we will have ruled out that there is anything going on in his stomach and throat. Jack will get lots of use out of the new portable DVD player we got. I wonder what the favorite movie will be.

Well placed intentions, but...

I get so sick of answering questions. How are you? How is William doing? Is he eating? I am so tired of telling the same thing over and over again. I know people are just trying to keep up on how we are doing and be supportive, but it is exhausting. I just don’t know what to say anymore. He ate half of his normal day worth of formula yesterday, what do I say? I don’t know why this is happening and so far the doctors don’t know either. I want to say call someone else and ask them. I just want to crawl in a hole and wait for this to be over, if only it were that simple.

The other thing that is hard (again I know that people are well intentioned, but…) is when they say, “well, at least you know what to do this time.” Or “look how great Jack is now, it will all work out.” I know they mean well, but it doesn’t help. I just makes me think we have been through all this once before and I don’t want to go back to shoving a tube in my child’s nose so he can “eat”, spending the night at children’s hospital for surgeries or procedures, guessing when the right age for a feeding program will be and holding my breath every time he gets a cold wondering if this will bring all of the pain memories back. I want to be able to make baby food and feed a child other than my nephew. I want to have cheerios on the floor for Mulligan to clean up. I want to see the funny face when he gets to have his first birthday cake and gets frosting everywhere. I missed all of this before and thought I would get the chance this time. It would make me feel better if instead of saying the above they said boy this sucks, you guys have really gotten the short straw.

I say all of this and then think of all of the families that are dealing with bigger problems like cancer, autism and other diseases. One trip to Children’s Hospital puts everything in perspective. This is our challenge and we will meet it head on like we did with Jack, but from time to time we are allowed to feel sorry for ourselves and cry or get angry. We wouldn’t be human if we didn’t have those moments.

A tooth?

So last night at dinner with friends I found that William has a tooth. That is 3 months earlier than Jack and 2 months earlier than his cousin. I had checked him a few days earlier and didn’t see anything, not that he makes it easy. There it is today. Is a 2nd one going to pop through too?

How much of what has been going on is due to his tooth? It explains his mild fever, looser poops and crankiness. Not wanting to feed is part of teething, we have now read. See, we never experienced feeding and teething together. Jack was tube-fed when he was teething. Plus it is really early for a tooth. Our pediatrician thinks that what is going on has to due with 3 things.

1. the tooth
2. reflux
3. developmental changes that take place around now

Our challenge is going to be figuring out what to do and how best to manage this. We are hopelessly jaded by our experience with Jack, so even if this is “normal baby stuff.” The first thing we will always think will be could this be the beginning of another feeding aversion and on the road to another tube. We try really hard to remember that Will is a different child and no matter how similar the situation may seem it could be something different. Here is hoping this is all just about a tooth.

I do have to say I am a bit sad that he has a tooth already, because I love the gummy grin.

What a week

Since I wrote last Will has gone from eating ~30 oz a day to eating 15-20 oz per day. Needless to say it has been a long week. Wednesday was the worst. He would drink 2 oz of his 6 oz bottle then stop and cry, not taking any more. After every feeding I was in tears and spent lots of time on the phone with Jim and the pediatrician, because I was 800 miles from home finishing up a visit with my parents. There were several points during the day that I just wanted to go jump on a plane and take the boys home, hoping that would fix it. It was actually really good that I was there, because my mom and sister just took over watching Jack and would take Will from me once I stopped feeding him so I could cry and make phone calls.

All I could think was why is he going from eating 6 oz a feeding to eating 2 oz in 2 days? It wasn’t making sense to me that it was just reflux. I am pretty sure that reflux was partially involved, but usually it is a much slower for them to work down that much volume. Finally I decided to take his temperature, just to see. Well he had a low grade fever and had been having looser poops. So now we think he is sick, but what can we do, it is Wednesday evening and we don’t fly home until Friday afternoon. After being reassured by our fabulous pediatrician that he wasn’t in any immediate danger of becoming dehydrated with a couple of low volume days we made an appointment for late Friday just to check.

Thursday and Friday were better eating days that Wednesday, but not at all normal days. His mild fever was down, but he was still crying and fussing through the feedings. We were able to make a desperate enough case that GI at Children’s Hospital has agreed to see us next week and it is a doctor that we know. He performed Jack’s G-tube placement surgery. Hopefully he will have some insight next week.

We made it home Friday, without to many issues on the airplane (just a red Tylenol spit-up and some normal Will fussing), to get to the pediatrician (not our normal one, but one in her office). She checked him out and didn’t see anything really obvious, but said that there was a bug going around and he could have a sore throat that she just couldn’t see. At least we are home and will get to see our pediatrician on Monday and GI on Wednesday. Hopefully we can start to get this figured out.

Now Will too

I should probably start at the beginning of the story to just give you some background. Jackson (who is now 4 ½ years old) started showing signs of feeding issues within 10 days of birth. We began by putting him on “hypoallergenic” formulas, while we ran some tests. During that time we also discovered during an upper GI procedure that he had “severe reflux.” This started months of switching formulas, increasing and changing medicines, many trips to Children’s Hospital for tests only to end up putting in a NG feeding tube when he was 4 ½ months old. We replaced the NG tube with a G-tube (surgically placed into is tummy) when he was 11 ½ months old.

The good part of his story is that he is now eating normally and probably better than a lot of kids his age and has been for 2 years. He participated in a 2 week intensive feeding program through Children’s Hospital when he is 2 ½ years old and was very successful. I will write more about his story later, but that is Jack in a nutshell.

Now on to Will… William was born March 18, 2009. Within 4 days he should the same signs of a milk protein intolerance as Jack, so we put him on the only formula that ended up working for Jack, Neocate (a prescription only formula that is very expensive, but works.) That helped the crying at night and got rid of the mucous in his poops. Two weeks later he started to cry during the feedings, showing reflux symptoms, so we put him on Prevacid. A week later we added Zantac at night to help him settle down. After an increase in his dose he has been humming along, gaining weight great until recently. He never has been easy to feed, but now he is crying during his feedings again and we are fearful that this is going to put us on another feeding aversion path.

It is such a helpless feeling to look at your baby crying while you are trying to feed them and not know how to help. It brings back all of the feelings I had with the months of fighting with Jack to get him to eat. Will may have not been easy to feed, but he would eat. I am just so fearful that he will decide that it hurts to much and stop eating just like his brother. All I want to do is help him.