Another weight check...

We went to the dr's office this morning for another weight check. We did not get to see our Pediatrician as it's his day off. I felt quite confident going since we made it through the night without any vomiting. Whewhoo!

His weight held steady over night. He still weighs 15 pounds 11 ounces. So, the plan is to feed him Neocate, essentially an ounce an hour, and to keep in close touch with Dr. Rhame.

Ryan threw up on the way home, but did just fine most of the day.

Within a few minutes of getting home Dr. Rhame called. In fact, we've spoken about 5 times today. He consulted with the GI Specialists. He has recommended a 3-4 day trial of feeding nothing but Neocate.

Dr Rhame has recommended checking Ryan into the hospital so that we can get the GI and Ped Surgeon consult expedited. And, since Ryan has started vomiting again tonight, I suspect we'll admit him tomorrow or Monday at the latest. It seems we will probably be doing a g-tube soon.

We went to the Pediatrician's office this afternoon for a weight check. Ryan had lost 5 ounces in 24 hours. Hmmm... not good. But, he seems to be doing better this afternoon.

Ryan and I made a trip to the Pediatrician's office today. He is really just so great to us. Did I tell you that he called us last night at 9.30 and at 10 pm just to check on Ryan? He was obviously worried, as I am as well.

The vomiting continued today. Not as frequently as on Sunday, and it doesn't seem to distress his body as much. He continues to stay awake after vomiting and seems to be alert. He had only vomited once today when we met with the Pediatrician. The plan then was to nurse as frequently as Ryan wanted followed by as much Pedialyte as he'd take. Assuming he didn't vomit more than once in 24 hours, we were then going to introduce Neocate, which is a formula void of any cow's milk ingredients. It is made from amino acids, and provides all the nutritional support he might need. We had planned that if he vomited more than once, we'd simply back up a step.

So, since he has continued to vomit, it looks like we're back to square one. The big challenge is to be sure he doesn't become dehydrated again.

Maybe some day Ryan will be running around the house creating absolute chaos, and perhaps I'll think back to this day and wonder why I didn't enjoy the quiet times more.

Words...

Main Entry:

¹tri·al

Pronunciation:

\ˈtrī(-ə)l\

1 a: the action or process of trying or putting to the proof : test
b: a preliminary contest (as in a sport)
2: the formal examination before a competent tribunal of the matter in issue in a civil or criminal cause in order to determine such issue
3: a test of faith, patience, or stamina through subjection to suffering or temptation ; broadly : a source of vexation or annoyance
4 a: a tryout or experiment to test quality, value, or usefulness — compare clinical trial
b: one of a number of repetitions of an experiment

Remember when the GI Specialist recommended "a 3 week trial." I thought at the time that he was using the word "trial" to mean definition #1a or definition #4a. I didn't think it was going to be #3.

Perhaps I was wrong. This "3 week trial" is beginning to feel like a real trial.

Ryan started vomiting again yesterday morning, and has continued to vomit every few hours for 24 hours now. He is still doing significantly better than last weekend, but he is obviously not feeling well. We have an appointment this afternoon with our wonderful Pediatrician. Again, I cannot say enough wonderful things about our Pediatrician. He called me 7 times yesterday to follow up on Ryan. He even gave me his home and cell phone numbers. Isn't that amazing?

Hopefully this trial will be over soon.

PS I see the blessings. I know Heavenly Father loves us and is watching over us. Please do not think that because I express some feelings of frustration that I do not see all the amazing things happening in our lives. I really do.

Starting Again?

This morning I bathed Ryan, dressed him and nursed him. I then carried him downstairs to answer the door. As we walked into the living room, Ryan vomited. That was around 10.45 am And, it's now 2.38p and he has been asleep since.

We've been on the phone with our Pediatrician several times. (Have I mentioned how much I love and appreciate Dr. Rhame?) He has looked at all the tests results from the hospital, talked to the hospital's attending Pediatrician, and to his GI Specialist. We've decided to stop the formula, nurse as much as Ryan will, and offer Pedialyte in between feedings. We'll go in and see Dr. Rhame tomorrow afternoon. If Ryan seems to be dehydrating, or having a tough time breathing, or looking pale, then I'll take him back to the ER again. Hopefully, the next 24 hours will just go smoothly and we won't have to do that.

7.55 pm update: Ryan continues to vomit every couple of hours. Dr Rhame has been keeping in touch with us & we're going into his office tomorrow. Hopefully, we'll get through the night. At least he has the energy to be a little grumpy tonight.

Ryan's Hospital Visit

Well, we made our 2nd trip to the Emergency Room on Sunday. It seems the problems probably started on Thursday. You probably remember from previous posts that Ryan's GI specialist had recommended adding a calorie- and protein-dense formula to supplement Ryan's nursing diet with the hopes of putting a little weight on Ryan.

You might also remember that I had some concerns about doing formula since all 5 of the other children have been lactose intolerant, and 2 have had milk protein allergies. I expressed that concern to the Dietitian and the Nutritionist last Thursday. They assured me that this "new" formula, Peptamen Jr 1.5, is great for all children and shouldn't be a problem since it's pre-digested. So, I started the formula Thursday evening.

He took it without any problems and I was even quite pleased when he finished off a full can in less than 12 hours. He seemed to like it. Friday went fine. We continued with the new supplement schedule and nursing. All seemed good.

Then Saturday morning rolled around and Ryan didn't want to wake up to eat. He didn't want to be touched and would do all that he could to avoid any kind of interaction. He mostly slept all day. Sometimes Ryan has not so good days and I figured we were just having one of those. At 2 pm I realized that he had refused food all day and so he had eaten nothing. Nothing in 14 hours.

I started to push to get him to eat. By bedtime, I managed a brief 3 minute nursing session and 1 1/2 ounces of the new wonder formula. He just lacked interest and was really tired. Around midnight he woke up with the saddest cry and was not comforted when I picked him up. That was odd. He doesn't usually wake up crying. In fact, he seldom ever cries but when he does I just hold him or nurse him and the world is good again.

He also had a slightly poopy diaper, but it stunk so bad that I decided to give him a bath. (Yes, in middle of the night.) I bathed him, tried to nurse him, but he wasn't very interested. So I gave him about 2 ounces of the new formula and put him back to bed.

On Sunday morning, I woke up early to get me and everyone else ready for church. The night before I had put a cute little Ralph Lauren blue sleeper on Ryan thinking that he could just wear it to church. So, when he woke up, I changed his diaper, and put him in the carseat feeling pleased that he was all ready for church. I noticed that his diaper was barely wet and thought to myself, "These new diapers are really impressive. You can't even tell it's wet." Then rushed out the door to get to church on time so that Jacob could pass the Sacrament.

Dwight carried Ryan into church in his carseat, sat down next to me, and told me that Ryan had just thrown up on the way into church, but didn't seem to be seizing. (He usually throws up right after a seizure.) So, I gave Dwight an extra set of clothes and diapers for Ryan, and the 2 went to the restroom to clean Ryan up. When they didn't return for a while, I sent David to check on them. David returned and told me that Ryan had thrown up again and that Dad needed my help. So following the Sacrament, I went out to help Dwight. At this point, Ryan had thrown up 3 times. While talking to Dwight, he mentioned that Ryan's diaper was dry, and I realized that what I had attributed to awesome diapers was really probably a diaper that was dry. That meant Ryan hadn't had a wet diaper in almost 12 hours. Not good.

So, Dwight and our good friend, Matt gave Ryan a Priesthood blessing and we headed off to the Emergency Room. Ryan continued throwing up, another 5 or 6 times. They finally gave him an IV (after 3 attempts ... should have listened to me about where to place it ... another story), and started him on some meds for the nausea and IV fluids.

He tested positive for blood in the stoole, and so they did an air enema. Yes, it was as awful looking as it sounds. The radiologist told me how lucky I was that I'd be able to seem my child's intestines. "Most parents don't get to do that." Really? Lucky? I'm not sure I've ever thought ... "Wow, I sure wish I could see my child's intestines!" How about you? Anyway ...

They thought it was possible that his intestines had become twisted or blocked. But, the test turned out to be normal, which was a relief.

This is getting too long ... so, let's just skip to the end. We spent 2 nights in the hospital, had LOTS more tests done, and the result ... "We don't know what happened." He had a few signs of infection (elevated white blood cell count), but no fever. He had signs of an allergic reaction (vomiting), but they wouldn't expect the extreme altered state/lethargy with an allergic reaction. They are still not sure what caused the problem, but since he is more alert, eating and peeing again, they sent us home.


We are thankful Ryan is home. I wish we had more answers. I am grateful for kind nurses and 2 very kind attending pediatricians. I really just wish we had more answers. I feel like we do a lot of tests but never get answers. I understand that sometimes an "answer" is nothing more than a lable and it doesn't really change anything. But, sometimes an "answer" or a "label" tells one what they can expect or how to treat something to make it better. Sometimes it simply offers a way to study and learn about stuff so that you can feel comforted by knowledge. Anyway ... thanks for everyone's prayers and support. I'm so thankful for all of our amazing friends and that you all share this journey with me. I appreciate your love, hugs, and support!

Oh, they told us to slowly resume his normal diet. So I started nursing him in addition to the Pedialyte on Monday evening. This evening I gave him 2 ounces (1 ounce and then 2 hours later another ounce) of the formula. The attending Pediatrician thought maybe the formula is just too dense and it dehydrated Ryan.

A 3 Week Trial

We went back to the GI Specialist today for a follow up appointment.

You may remember that we did an Upper GI Series last week. We were pleasantly surprised to find that the upper digestive system was all developed correctly. "A few episodes of deep penetration were observed during active swallow" and "an episode of reflux to the upper esophagus" was observed within than two minutes of eating. Thus they started him a prescription of Prevacid.

Ryan has lost 12 ounces since we were there last. Thus, the diagnosis "Failure to Thrive (FTT)" became official, simply meaning that Ryan is not growing at the rate he should. His growth curve has not only flattened out, but has actually started to drop. We had previously discussed that we may need to have a feeding tube surgically implanted into his stomach. However, since there are no abnormalities in the upper GI, we are going to try supplementing his normal eating schedule with a prescription formula. They would like for him to eat an additional 16 ounces of a high caloric, pre-digested, lactose free formula. We estimate that he is currently only eating about 16 ounces of breast milk each day. Thus, this will basically double the volume of food he's taking in. It should be interesting. We're going to try this for almost 3 weeks. If he doesn't gain weight, or has a negative reaction to it, then we'll have to revisit the idea of the feeding tube. But, we are hopeful.

We also changed the prescription for the reflux. It became obvious after about a week of using the Prevacid that it was making Ryan's tummy hurt. So, we're going to try a new prescription and see if that helps.

We are still waiting for the repeat bloodwork results to come back. They had the results; however, their computers were down so they couldn't view them. We know the original blood work showed:
BUN/Creatinine Ratio HIGH
Carbon Dioxide, Total LOW
Calcium, Serum, HIGH
Albumin, Serum HIGH
A/G Ratio HIGH

And, his urinalysis showed an Abnormal Trace of WBC Esterase

I don't even know what all of that means, but hopefully the repeat bood test & urinalysis will be clear of any concerns. We should hear back from the Dr's office later today or tomorrow.

Test results - Whew ...

I just got a call regarding one of yesterday's test results. It was a "free flowing venous lactate" test. Thankfully, it came back within normal levels, which means no muscle biopsy! Whewhoo! 1 down, 2 to go ... well, kind of 2.

Just before getting those test results, I scheduled his CF Sweat test for June 19th. (Yes, I had been tested before to ensure that I'm not a carrier. However, when I did the test 10+ years ago, they were only checking for 50-90 mutations of the gene. They can now check for 1500 mutations. Thus there is still a possibility.) This is a non-invasive test and since Ryan's sweat is extremely salty, it makes sense to rule CF out, especially since it's what my sister had.

And, we also have the modified barium swallow test on June 18th.

More tests and Dr Stratton

We went to see Dr Stratton, the Geneticist again at the recommendation of our Pediatrician. He thought it might be wise since we now have the additional “symptom” of the submucous cleft palate. (There were genetic/chromosomal issues that we had eliminated based on the absence of the cleft palate.)

I really like Dr Stratton. I love the way he explains stuff to me in such great detail. He has an amazing way of mixing medical terms with simple terms to make everything seem so simple to understand. Plus, he draws good pictures. Today he reviewed all the previous diagnosis, Ryan’s history, and the prior tests that we have done. We discussed in great detail the results of January’s MRI. He was pleased to see the Radiologist who read Ryan's MRI was one that he feels a high level of confidence in his skill.

The MRI, in case you don't remember, came back inconclusive. However, the radiologist had noted that there were areas of over sulcination and polymicrogyria. Dr Stratton drew pictures and explained polymicrogyria (PMG). The PMG could certainly explain the vision issues, the developmental delays and the seizure disorder. However, it doesn’t really account for everything we are seeing with Ryan.

Dr Stratton is confident that there are lots of things we can rule out, especially since we had the Chromosomal Microarray test done and it came back negative. Additionally, he was glad to see that we had already received a negative test result for DiGeorge syndrome, which Ryan has some strong indicators of also.

Today Ryan weighed 15.2 pounds. He has lost 14 ounces since his last dr's appointment less than a month ago. Many of you have commented on how healthy and chubby he looks, but apparently looks really can be deceiving. I think there are 2 reasons why he doesn't seem little. One, he still behave like a young infant so it creates an illusion of him being bigger. (Does that make sense?) And, second, he seems to store all of his fat on his arms and legs, but very little on his core.

Of course, what really matters is his personal growth curve. Deborah has always been on the little side, but Ryan is falling farther away from the growth chart's bottom percentage, and his "curve" was becoming more of a straight line, but apparently is now starting to go downward.

Dr Stratton discussed the pros and cons of doing a g-tube into his little tummy. We'll be discussing that more on Thursday with his GI Specialist. I still have really mixed feelings about it. It didn't help when Dr Stratton, obviously not thinking, said, "Of course, it carries all the risks of any surgery. I've seen babies die on the Operating table during a minor surgery because an artery was in an unexpected place." Nice, right? It's a good thing I am already aware of this risk. Otherwise, Dr Stratton might have had a blubbering mom on his hands.

Anyway ... Ryan's head continues to be up in the 95+%, and is especially concerning considering the size of the rest of his little body. The big head and the hypotonia can possibly point to other diseases that we're just going to skip naming. Dr Stratton gave them to me with a strong warning not to go home and research them. Of course, I did come home and research them. I'll spare you the option.

After a very thorough examination and a long conversation, he ordered more blood work and an urinalysis: 3 Tests. It took 2 urine bags to get a good collection, and 1 hour to find his tiny little veins under the fatty pads of his arms and legs. They finally managed to get one collection from his right foot. They then tried a tiny vein by the thumb side of his wrist, which they never could hit even though they could supposedly see it. And, then they went back to another vein in the right foot. Unfortunately, they couldn't use his right arm, which seems to be the best place on him, because he had a bruise there from Monday morning's blood draw.

So the test results ... One should be back by tomorrow morning. If that one comes back positive, then Ryan will need to have a muscle biopsy, which means we may need to reschedule his upcoming surgery so that we can do it at the same time. The 2nd test result should be back in 1-2 weeks and the the 3rd test result will not be back for 4-6 weeks because it is a DNA test, which apparently is sent off to a very busy lab.

Please pray all these tests come back negative.

Raspberries

If you love raspberries, like I love raspberries, I bet you'd feel quite sad if you saw this in your sink. What you probably can't see from the picture is that ALL of these yummy looking raspberries have mold on them. Bummer, right?

But, then the joy! See these:


These are 1/4th ... yup that's right one quarter of the yummy ready-to-eat raspberries. (That's an 8 cup measuring bowl.) Oh, the joy!!!

Our friend Michelle shared the opportunity to buy a FLAT of raspberries for $6.


So, we bought 5 flats. The kids ate a full flat right after I got them home. I couldn't even keep up with Deborah. She really loves raspberries!

But finally tonight I cleaned the rest of them. I put about 16 cups in the freezer, 8 cups in the refrigerator for the kids tomorrow, and took this big bowl and this wonderful bar of white chocolate with coconut (melted of course) up to our bedroom. Dwight and I watched a movie and enjoyed these yummy raspberries and white chocolate.

Wish you could have been here!

Today was another busy day. Well, it was at least scheduled as a busy day. A doctor's appointment, lab work for Ryan, visiting teachers, lunch with a dear friend, visiting teaching appointment, grocery shopping, errands, employment work, get Jacob off to his canoeing trip, take Jessica to a party, finish preparations for Saturday's crazy busy day.

But ... well, apparently I've kind of gone AWOL. Without anyone's "permission", I skipped out on more than 75% of today's scheduled tasks. What have I done with the time? I sat in my desk chair for more than 45 minutes not doing anything. Really. Nothing. (Okay, Okay, David -- Yes, I was breathing, but nothing else. Oh, and yes, I was blinking occasionally. Can I go on now?)

When Dwight was leaving this afternoon to run errands, I told him I was going to take Ryan for his lab work while the other kids watched a movie downstairs. I put sleeping Ryan in his carseat and gathered my stuff, really intending to leave. But, then Dwight left. The room was quiet. No tv. No lights. No noise. And, that's when I heard it. I heard it just like I can now hear a child calling my name. It. It was the bed calling my name. "Just lay down for a few minutes," it pleaded, begging me to climb on to it's soft mattress and place my head on its perfect down pillow.

At first I resisted its calls knowing that I really needed to get the lab work done. But as I walked closer to the bed (intending to leave), the calls intensified, and soon I found myself snuggled between soft and silky 800-count thread sheets covered by the perfect weight of a much loved quilt. It only took a minute of being in its grasp before I decided that nothing really had to get done today. And, there I stayed for more than an hour.

Everything can wait, right? Right or wrong. Everything will wait. The choice was made and now I have the consequences. I went to the dr's. I met with my visiting teachers. And, I successfully managed getting Jacob out the door seemingly prepared for his canoe trip. That's it for today. Tonight I'll take Jessica to her party. And, tomorrow ...

Well, tomorrow I'll try to make up for the rest.

Upper GI Series

Today Ryan had his upper GI series. He had no problems drinking from the bottle and didn't seem to mind the taste of the barium-flavored milk. The really good news is that we didn't see the structural defects in the upper digestive system that we anticipated. Everything seemed to be where it should be and seemed to be shaped the right way. Whew...

We did, however, find that after about 1 ounce, the milk was pushed from the stomach back up the throat even as he was drinking. Reflux. He's already on Prevacid and he already sleeps sitting up. So, how do we treat it? I don't know yet. We will meet with the GI Specialist, the Nutritionist and the Dietitian next Thursday.

We also received a call this afternoon to let us know that some things were off in Ryan's bloodwork. Calcium levels, I think. (I was driving and despite my best efforts to quiet Jessica, she was talking through the whole conversation.) So, I'm not sure exactly what numbers were too high, but they want more blood drawn. His white blood cell count was also high. So, they are going to repeat his urinalysis as well. This time they want him to be catherterized instead of bagged. Poor guy. And, they are going to culture the urine for 72 hours.

So, good news ... no structural defects. Whew.

Neurologist Appointment

Ryan and I went to see the Neurologist today.

I updated Dr Seals on all the other doctor appointments, their diagnosis, and the new tests. We discussed that Ryan's red blood cell and platelet counts were really high on his hospital labs. He is anxious to see what they look like now. He is also anxious to see what we learn from the GI tests.

As for now, we're going to continue giving the same amount of medicine for the seizures, double the vitamin B6 dosage, and just hope for the best. The dr would like to delay the next MRI. He thinks we've been putting the little guy through enough and that we're just not going to get that much new information from an MRI due to him still being a small guy. So, we'll look at doing that later this year.

The appointment today was very enjoyable. We had quite the intellectual conversation. I'm reading a book called The Great Brain by HP Newquist. Dr Seals enjoyed looking through it and gave his stamp of approval on it. He also recommended a couple of other books that I might enjoy: The Executive Brain and Human. I might have to make a trip to the library soon.

PS Check out Ryan in his glasses. He looks smart enough to be able to read the Brain books, right? :)

A Little Good News

Today Ryan and I went to visit with his ENT Specialist. You might remember that at the last visit, Dr. Moe diagnosed Ryan with a submucous cleft palate, mild septal deviation, and a mild adenoid hypertrophy, and prescribed a steroid spray to reduce the excessive congestion the little guy had.

So, today we went in for our 6-week follow up. Dr Moe wanted to see the extent of the submucous cleft and was able to since the congestion is almost completely gone. The good news is that there is no hole. The muscles do not entirely align like they should; however, it doesn't require surgery, at least not for now.

We may need to consider surgery in the future, but we're talking about at least a couple of years down the road, and Dr Moe thinks we probably won't need it at all. (Keep those prayers coming!)

We can also start weaning him off the steroids. I'm sure Ryan will be very happy to be done with us spraying something into his nose.

Handsome, right?

For Jacob's birthday, Dwight bought him a new suit coat and a tie. This is what he wore today when he reverently passed the Sacrament.
Wow! It was a great Mom moment!

Doesn't he look handsome?

Appointment with the Gastroenterologist

Today Ryan and I went to visit the Gastroenterologist. It has been difficult getting this appointment. We have waited almost a full month to see him. As you may recall, he is 1 of 2 specialists in the San Antonio area. The other only works part-time, and is not able to do procedures. Unfortunately, Dr. Elizondo is not covered by our insurance, but at least he was able to get Ryan in soon. (We also called other GI specialists within a 150 mile area, and all of them had a waiting list that extends any time from August to October.)

I felt anxious about this appointment. I was concerned that I didn't have other options if we didn't like this Doctor. So, I was relieved when he came in and I felt immediately comfortable with him and confident in his skills.

Ryan was referred to the GI Specialist because his growth curve has started to flatten out. We are concerned that he may be aspirating his foods, and that he may not be getting enough nutrition to sustain adequate growth. Dr Elizondo explained to me that when you have a midline defect, such as Ryan's submucous cleft palate, it is common to have other midline defects in the digestive area. Thus, he has ordered an upper GI series, which is schedule for next Thursday. He also ordered bloodwork (CBC, complete metabolic panel, and TSH) and a urinalysis.

We have an appointment in 2 weeks to visit with him again, and to see his Nutritionist and Dietitician. The test results will all be back in by then and we will be able to discuss what needs to happen to ensure that Ryan is getting the nutrients he needs to sustain adequate growth.

We took Dad to the airport this morning and then resumed our busy schedule with appointments. It was great to visit with Dad! He is a great man and we are blessed to have him in our lives!

Jacob and I went this afternoon to see Dr Rhame for Jacob's 12 year old well-child care check up. Jacob is 58" tall and weighs 80 pounds. He is in the 50th percentile for his height and the 25% percentile for his weight. Dr Rhame said he could have a second helping of good foods, but cautioned that he not go home and fatten up.

Dr Rhame and one of his Associates also heard a possible heart murmur and would like Jacob to be seen by the Pediatric Cardiologist just to make sure it's a harmless heart murmur. We don't anticipate it being anything of concern, but we're just going to have it checked just to be sure.

Happy Birthday, Joyce!

We love you Aunt Joyce!

I'm currently enjoying some time with my father who is here visiting from Indiana. I hope you all are blessed to have an amazing father like mine!
While he was here, he went with us to the boys' soccer games, the zoo, and to Toys R Us.
All of the kids were excited to have Papa here. I think Deborah was the most excited. Papa was kind enough to follow her around as she ran excitedly from place to place. She loved having his personal attention!

Happy Birthday, Jacob!

Happy birthday to Jacob!Happy birthday to Jacob!Happy birthday, dear Jacob!Happy birthday to Jacob!Today is Jacob's 12th birthday! It's a big birthday with some new privileges. He will be ordained a Deacon, and he gets to start attending Young Men activities at church as well as participating in the Boy Scout Troop (without parent participation on campouts).For his birthday, we picked up Papa from the airport and then had lunch at Chama Gaucha. It was a delicious lunch. We came home and had a fun cake that Jessica made for him, opened gifts, and then sent him off to his first Young Men's activity.He is also planning to go to Incredible Pizza with one of his friends, but that is going to wait till a Tuesday night so that he can enjoy the unlimited games.So to Jacob I say: Happy birthday! I love you and I appreciate all you have taught me. As I've said before, I am a better mother because of you. I'm pleased with all the progress you have made this year. You're doing great and I'm proud of the young man you are becoming! I love you!