They talked, watched videos, did some hands-on stuff, and even made their own solar ovens and tin foil dinners.
They also had time to swim. They ate their tin foil dinners and even had time for a game or two of "Ninja."
David had a great time!
Saturday, July 18, 2009
Cool Science Club
David has started attending a really cool science club. Today he went to a Solar Day Camp and learned lots about electricity and solar energy. I stayed for the first couple of hours and found myself wishing that I could stay all day. The teacher, Mr. Bacon, was amazing! He taught.
They talked, watched videos, did some hands-on stuff, and even made their own solar ovens and tin foil dinners.
They also had time to swim. They ate their tin foil dinners and even had time for a game or two of "Ninja."
They talked, watched videos, did some hands-on stuff, and even made their own solar ovens and tin foil dinners.
They also had time to swim. They ate their tin foil dinners and even had time for a game or two of "Ninja."
Tuesday, July 14, 2009
Saturday, July 11, 2009
Friday, July 10, 2009
Eye Doctor
I took Ryan to the Ophthalmologist this morning. No change. His eyes are still not focusing and he still ignores stimulus in regular lighting. Dr Cohen recommended we not worry about using the glasses for a while, and continue to do visual therapy. He also would like us to keep him posted on what the Neurologist or other dr's find.
A Rare Treat
Today was a hot and humid day. Triple digits. David, Johnathon, Ryan and I were waiting for Jessica to finish a beauty appointment and I decided to get a rare treat... Gelato! And, even more odd, I said "Yes!" to two scoops. (My kids are looking for pods.)
Thursday, July 9, 2009
More Seizures
Tuesday evening, I took Jessica shopping for dress clothes. My dear Jessica does NOT like dress clothes. She feels naked wearing skirts, doesn't like the way anything dressy looks, and thinks "it's stupid to wear dress clothes to anything but church on Sunday." So... as you can imagine shopping for dress clothes with an opinionated 14 year old was not a fun expedition. We spent several hours and came home empty handed. It wouldn't have been too disappointing to have saved the money if she didn't really NEED to have dress clothes by Monday. But with the impending deadline, it was a bit frustrating.
After we were done shopping, I dropped Jessica and Ryan off at home to go run a report for my Visiting Teaching Coordinator assignment at church. I normally give Ryan his medicine at about 8.30 am and 8.30 pm. Well, I was gone at that time and didn't think to remind Dwight to do it. I also didn't think to do it when I got home that evening ... or even to ask if Dwight had remembered to do it.
Well, Wednesday morning Ryan woke up early and he was doing the arm jerk thing about every 10 seconds and he kept doing it for about 2 hours. I gave him his medicine, and tried to feed him a bottle, but he threw up all the food and the medicine. I suspect he probably had another seizure that involved his little eyes bouncing, but the lights were off (cause it was early, early in the morning) and so I didn't see it. He doesn't normally throw up though unless he's seizing. If he throws up once during the day, he typically throws up several times that day.
I called the Neurologist and after he received the message of what had happened he asked me to bring him to the office. So we did. The Neurologist said he's having Myoclonic Seizures ... that's the arm jerking thing ... and it's not a good thing. We still don't know why. I asked about a couple of syndromes that I had read about online. He said neither one of them fit for Ryan. The primary issue with both syndromes is the seizure. Then he said, "For Ryan, these seizures are just one of a mountain of problems." I can't even describe to you what I felt/feel about that statement. It's true. I know it's true. It was just hard to hear.
So for the next month we're going to try increasing his Keppra every evening from 3 ml to 4 ml. Then we'll report back in a month.
This morning the myoclonic seizures continued but only about 3-4 times each minute. So perhaps we're seeing a little bit of an improvement.
PS In case I haven't said this before the myoclonic seizures primarily happen in the sleep to wake or wake to sleep transitions. Once he's really awake, they only seem to occur maybe once every 2-4 hours.
After we were done shopping, I dropped Jessica and Ryan off at home to go run a report for my Visiting Teaching Coordinator assignment at church. I normally give Ryan his medicine at about 8.30 am and 8.30 pm. Well, I was gone at that time and didn't think to remind Dwight to do it. I also didn't think to do it when I got home that evening ... or even to ask if Dwight had remembered to do it.
Well, Wednesday morning Ryan woke up early and he was doing the arm jerk thing about every 10 seconds and he kept doing it for about 2 hours. I gave him his medicine, and tried to feed him a bottle, but he threw up all the food and the medicine. I suspect he probably had another seizure that involved his little eyes bouncing, but the lights were off (cause it was early, early in the morning) and so I didn't see it. He doesn't normally throw up though unless he's seizing. If he throws up once during the day, he typically throws up several times that day.
I called the Neurologist and after he received the message of what had happened he asked me to bring him to the office. So we did. The Neurologist said he's having Myoclonic Seizures ... that's the arm jerking thing ... and it's not a good thing. We still don't know why. I asked about a couple of syndromes that I had read about online. He said neither one of them fit for Ryan. The primary issue with both syndromes is the seizure. Then he said, "For Ryan, these seizures are just one of a mountain of problems." I can't even describe to you what I felt/feel about that statement. It's true. I know it's true. It was just hard to hear.
So for the next month we're going to try increasing his Keppra every evening from 3 ml to 4 ml. Then we'll report back in a month.
This morning the myoclonic seizures continued but only about 3-4 times each minute. So perhaps we're seeing a little bit of an improvement.
PS In case I haven't said this before the myoclonic seizures primarily happen in the sleep to wake or wake to sleep transitions. Once he's really awake, they only seem to occur maybe once every 2-4 hours.
Friday, July 3, 2009
Another Milestone!
Ryan has achieved another milestone! Today he held his own bottle for a couple of minutes. We are so proud of him!
In case you don't know, let me explain why it's so exciting for an 11 month old baby to hold his own bottle.... Ryan has hypotonia, which basically means he's super floppy. He has been using his legs to kick and to move his body from his back to his side, but he generally doesn't use his arms at all. In the past month, he has started using his hands more, but it's very awkward and difficult.
If you know Dwight, you know how persistent (read stubborn) he can be. Dwight has been giving Ryan his bottles a lot lately. When he does it, he's been helping him hold his hands on the bottle. I, of course, quickly realized that this was a great idea and followed his lead. Typically, as soon as I would remove my hands, his arm would flop back to his side. But not today!
Today he actually kept the pressure on his hands and maintained for probably 2 full minutes. We're so proud of him!!!
In case you don't know, let me explain why it's so exciting for an 11 month old baby to hold his own bottle.... Ryan has hypotonia, which basically means he's super floppy. He has been using his legs to kick and to move his body from his back to his side, but he generally doesn't use his arms at all. In the past month, he has started using his hands more, but it's very awkward and difficult.
If you know Dwight, you know how persistent (read stubborn) he can be. Dwight has been giving Ryan his bottles a lot lately. When he does it, he's been helping him hold his hands on the bottle. I, of course, quickly realized that this was a great idea and followed his lead. Typically, as soon as I would remove my hands, his arm would flop back to his side. But not today!
Today he actually kept the pressure on his hands and maintained for probably 2 full minutes. We're so proud of him!!!
Monday, June 29, 2009
Johnathon got new glasses!
These aren't his new glasses, but aren't they awesome?Johnathon, in typical Johnathon fashion,
had a GREAT time at the Optometrist's office!
He explored everything and tried on every pair of kid-size glasses in the shop,
laughing and smiling the whole time.
It really brightened everyone's day to watch such a happy child.
Tuesday, June 23, 2009
We're home
The surgery went well. I'm going to be sensitive to Ryan's future privacy and not post all the details of the surgery here, but suffice it to say that things went well. Ryan had a tough time waking up after the surgery, and required some extra breathing assistance to keep his oxygen saturation levels above 92. But eventually he figured it out and woke up. I'll add a picture or two later.
He's napping right now and I think I'll do the same thing. Thanks again for all the love and prayers!
Monday, June 22, 2009
Surgery in the morning...
I just thought I'd let you all know that we decided to go forward with the bi-orchioplexy and hernia repair in the morning. We had originally thought to have a different surgeon do it, but since Dwight was laid off and we may be changing insurance we decided to go ahead and do it tomorrow.
The surgery is an out-patient surgery. They will make two small incisions, one on each side of the genitals. We are hoping to find both testes are normally developed and that they just never descended. When they do find them, hopefully, they will simply need to be pulled down into the scrotum. There is a chance of them being "tethered", which will mean a little more work. Let's just pray that's not the case.
Once they have both testes in the scrotum, they will put a stitch through each one and pull the thread outside the scrotum and attach it to a button. Yes, a button ... just like what you find on shirts ... except it will be a medical grade, extremely clean button (at least to start). Then they will repair the hernia that is usually there with undescended testicals.
The button will stay on until everything has healed and then it will be removed.
If I don't make it back on tomorrow to give you an update it means that we have spent the night at the hospital. While it is an outpatient surgery, Ryan has become very non-responsive to small things that other children handle without any problem. Therefore, the surgeon recommended that we plan to spend the night. If there's any doubt as to how medically stable he is, we will spend the night. I appreciate that they are not intending to rush us out the door.
So, we do expect everything to go very smoothly, but please remember us in your prayers, and even more importantly please remember the Surgeon and his staff in your prayers. We love and appreciate you all and count each of you -- even you blog stalkers :) -- as one of our blessings.
The surgery is an out-patient surgery. They will make two small incisions, one on each side of the genitals. We are hoping to find both testes are normally developed and that they just never descended. When they do find them, hopefully, they will simply need to be pulled down into the scrotum. There is a chance of them being "tethered", which will mean a little more work. Let's just pray that's not the case.
Once they have both testes in the scrotum, they will put a stitch through each one and pull the thread outside the scrotum and attach it to a button. Yes, a button ... just like what you find on shirts ... except it will be a medical grade, extremely clean button (at least to start). Then they will repair the hernia that is usually there with undescended testicals.
The button will stay on until everything has healed and then it will be removed.
If I don't make it back on tomorrow to give you an update it means that we have spent the night at the hospital. While it is an outpatient surgery, Ryan has become very non-responsive to small things that other children handle without any problem. Therefore, the surgeon recommended that we plan to spend the night. If there's any doubt as to how medically stable he is, we will spend the night. I appreciate that they are not intending to rush us out the door.
So, we do expect everything to go very smoothly, but please remember us in your prayers, and even more importantly please remember the Surgeon and his staff in your prayers. We love and appreciate you all and count each of you -- even you blog stalkers :) -- as one of our blessings.
Thursday, June 18, 2009
More tests and more good news...
We have now made it for 4 days without any additional vomiting. Whewhoo!
We had a modified barium swallow test with a speech pathologist today. The Speech Pathologist simply prepared various textures of food to give to Ryan and watched the way he swallows on x-ray. The concern was that Ryan might be aspirating food (swallowing it into his airway instead of his tummy).
They started with a thin liquid similar to water or formula. Then moved to a thicker liquid, think nectar. And, then finally to stage 3 applesauce.
The good news is that Ryan did not aspirate any of the food. However, he has a tendency for "deep penetration," which basically means he swallows and holds the food over the airway before finishing the swallow. The really good news is that he doesn't do the deep penetration thing when drinking cold items.
Will finish in a minute...
Okay, so I forgot to come back and finish ... worse yet ... I don't remember what else I was going to tell you. It must not have been that important, right?
We had a modified barium swallow test with a speech pathologist today. The Speech Pathologist simply prepared various textures of food to give to Ryan and watched the way he swallows on x-ray. The concern was that Ryan might be aspirating food (swallowing it into his airway instead of his tummy).
They started with a thin liquid similar to water or formula. Then moved to a thicker liquid, think nectar. And, then finally to stage 3 applesauce.
The good news is that Ryan did not aspirate any of the food. However, he has a tendency for "deep penetration," which basically means he swallows and holds the food over the airway before finishing the swallow. The really good news is that he doesn't do the deep penetration thing when drinking cold items.
Will finish in a minute...
Okay, so I forgot to come back and finish ... worse yet ... I don't remember what else I was going to tell you. It must not have been that important, right?
Sunday, June 14, 2009
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.
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.
Friday, June 12, 2009
Thursday, June 11, 2009
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.
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\
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.
Wednesday, June 10, 2009
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.
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.
Tuesday, June 9, 2009
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.
Friday, June 5, 2009
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.
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.
Wednesday, June 3, 2009
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.
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.
Tuesday, June 2, 2009
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.
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.
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