Tuesday, May 31, 2005

Another trip to the ER for Memorial Day Weekend!

Well, Jenelle just couldn't go longer than a week without a trip to the ER. Just as we began Memorial Day Weekend with some fun at home, Jenelle started crying inconsolably with a fever of 101. It was around 9:30 on Friday night when I put in a call to our doctor to see if they had Saturday office hours - I was convinced she had another Urinary Tract Infection because her crying was sporadic. I really did not want to go back once again to the ER. However, once the on-call doctor returned my call and heard Jenelle's symptoms and recent history of meningitis, she insisted we take her to the ER if not then, first thing in the morning. Dreading the ER on a Saturday morning, I called ahead to find out they were actually not busy, and opted to take Jenelle in that night to "get it over with!"

At the ER, we had the same nurse who admitted us less than two weeks ago, and a doctor who recognized us from a recent visit prior to that. Literally, we've been to the ER at least once a week in the past 6 weeks, except of course for the week we spent at CHOC. They ran blood and urine tests which were normal, and sent us home around 2:30 a.m. The ER doctor felt Jenelle was probably coming down with a "viral" infection (she had a slight runny nose on Friday) which of course would explain the slight fever. Of course with the recent Meningitis, we had to be careful. We slept in the next morning, and thankfully with the help of Children's Tylenol Cold, we made it through the rest of the weekend without a runny nose, crying or fever!

Just a few minutes before we thought we needed to call the doctor on Friday, I was able to "capture" Jenelle's laugh and giggles on a video clip. I've posted the clip at a website I created on MSN under the "Documents" category on the left hand side. Go to the Curran Family Home Plate on MSN Groups to enjoy it (you may need to create an MSN account for free to view it!) I've also posted two "still" photos below that show Jenelle's new smile on this website as well.

Still photo of Jenelle's laugh Posted by Hello

and another smile! Posted by Hello

She has been laughing and smiling daily - though we aren't sure yet what provokes her. Still, the reward of laughter is small, but one we will greatly accept. Our Kidney Doctor appointment was postponed because Jenelle hasn't had her ultra sound test yet, which has now been scheduled for Monday.

As always thank you for the continued prayers. I'll keep you posted!

Thursday, May 26, 2005

Appointments with the GI Doctor & Regional Center

We had a busy day with Jenelle yesterday and fortunately it was appointments that kept us busy and not the ER! Our day started out with a trip to the GI Doctor. As I said previously, Jenelle has not gained weight in 15 months, and has not grown in height in almost 12 months. They agreed that a G-tube is necessary. Some of you have asked, so I'll try to describe a G-tube; it is a tube that is inserted directly into her stomach so that food can be provided via a tube, and not by mouth (think Terri Schaivo). The GI Nurse Practioner said she felt we could probably get by with minimal use of the tube for distribution of meds and nutrition in the mornings and evenings, and give "oral" foods during the day when meds are not being given. She didn’t think it would take long to catch Jenelle up on her weight but could not give us an estimate of how long Jenelle would need the tube. That has been my biggest concern because I have been told hat once a child is on a G-tube, it is hard to get them off it. We are now waiting for insurance authorization to set a date for surgery (out patient) but were told Jenelle could have the procedure in the next 10 days. While she is having the surgery for the G-tube, they also want to run a test and biopsy for reflux. This may require a 24 hour stay in the hospital because a probe needs to be inserted into Jenelle's upper GI tract to measure PH readings and look for cell damage from stomach acid, if any. So technical!

Yesterday afternoon we met with Regional Center for Jenelle's bi-annual IFSP (Individual Family Service Plan.) This was actually Jenelle's last IFSP as she will be transitioned to our local school district in October when she turns 3. When that happens, we'll be dealing with the world of "IEP" (Individual Education Plan - those of you in special needs education know what I'm talking about!) We have a new case worker, and from what I'm hearing from other families, we've been very lucky to have had our first case worker for so long. I was very happy with this "new" case worker because she had already prepared contracts to keep all of Jenelle's therapies the same, and was quite open to our request to have Jenelle evaluated for Speech Therapy. Usually Regional Center only pays for a child to get Speech Therapy if the child is at the developmental level of 18 months (which Jenelle is not on paper). However, she agreed that we certainly had reason to request an evaluation because Jenelle has been showing more signs that she understands words and knows people by name. It would be wonderful to get this therapy started prior to her entering the school district in October, so I hope that works out. We will meet again in 3 months to have Jenelle evaluated by the school district, and get that process started.

Jenelle started back to school this week and seems very happy to be back in her old routine. She has been having more bouts of giggling to the delight of her teachers and caregivers. Unfortunately our worst complaint of late is insomnia again! Poor Jenelle can't seem to find a way to get sleep when we put her into bed, so of course, we are sleep deprived as well! I spoke to UCLA today about it and they wanted to check her Dilantin levels, but felt is may be the culprit. Other than that - no complaints as our lives are slowly getting back to normal, whatever that is for the Currans!

We thank you all for the continued prayers and wish you all a wonderful and safe Memorial Day Weekend. Our next appointment is with our Kidney Doctor on June 1 - I'll keep you posted!

Friday, May 20, 2005

Jenelle is home!

Jenelle was released from the hospital on Wednesday and we finally got home in the late afternoon. Jack was very happy to see his sister again, and she even managed a small smile for him as well. We have found it is better for Jack if we avoid using the "hospital" word when Jenelle is admitted. However, 8 days in the hospital was a long time to avoid the subject with Jack. He immediately asked me if her "broken brain was fixed" and I explained that Jenelle was actually sick with the tummy flu, similar to the one he had experienced a few days prior to Jenelle's admission. He was content with that answer, but has asked each night since we've been home who was actually sleeping at home that night. At bedtime on Wednesday night, we had a special treat. I was reading books to Jack, and Brett brought Jenelle in to join us. Brett was being playful with Jenelle and lifted her into the air up to the ceiling. Jenelle smiled and giggled loudly in response! She has never done this before, so Brett continued to do this getting a laugh from her each time (about 10 times in a row!) She seems very happy to be home. Jack asked me if Jenelle could sleep with him that night, so I had to explain that she was safer in her crib. It's nice to finally be home!

I wanted to wait for our trip to UCLA before updating everyone again. We saw Dr. Shields at UCLA yesterday and brought him and his team up to speed on our 8 day adventure at "Spa CHOC." Jenelle pretty much looks like a train wreck with her bruises from lab draws, and her new found "allergy" to tape and latex that we discovered sometime last week upon leaving the PICU. Would you believe it? - Jenelle had only 2 small seizures yesterday - her best in weeks! Jenelle came home with Dilantin added to her regular seizure meds, and Dr. Shields thinks we should continue on a very low dose for the next month to give things time to settle down. Jenelle has not gained a pound in 15 months, and is actually 2 pounds lighter than she was in the fall. Dr. Shields is in favor of her getting a G-tube, and felt we should get that started before putting her back on the Ketogenic Diet again. He said the Diet often can lower her immune system, but definitely was not the cause of her recent illness. So, he loaded us up with prescriptions, and plans to see Jenelle again in early July.

Many of you have asked - Jenelle's meningitis was not contagious because it was bacterial and not viral. She went back to daycare this morning with her brother, and we are to see her pediatrician this afternoon. We have an appointment with the GI doctor next Wednesday, and I imagine we'll get a surgery scheduled for the G-tube placement. She still is not eating solids and I fear she has lost some skills. Dr. Shields suggested she had been through a lot and it may take a while for her appetite to come back fully. We are hoping with time she will eat better, and realize a G-tube will help with nutrition and meds.

For those who have commented on it, yes, my sense of humor is still in tact. How could I survive without it and my sense of sarcasm! It has been a long two weeks, and I am looking forward to a relaxing weekend with the family. Thank you all for your extra prayers these past two weeks. We really appreciate it.

Tuesday, May 17, 2005

Almost home?

Well, today was another interesting day in the hospital, and Jenelle officially stumped yet another doctor (not that we're trying for a record or anything!) In the early afternoon, the chief resident came in to inform us that they identified the bacteria found in Jenelle's spinal tap. It was some type of "strep" bacteria found in "oral infections" (usually an infected tooth, throat, ear infection and/or sinus infection.) They asked if Jenelle had had dental work recently… uh, no! So, they called in the Infectious Disease Doctor. He did some research and found only 5 reported cases of children with this type of bacterial meningitis, all of which had some type of dental work and/or tooth infection. "I've never seen this before!" he said. Oh joy, we stumped yet another doctor! So, because there were 5 reported cases, he felt compelled to call in a dentist to check to see if Jenelle had a cavity and/or abscess tooth. They warned us that if she needed x-rays, she would need to be "transported" out of the hospital to the dentists office via ambulance. FUN, a field trip out of the hospital for a change!

So we met with Dr. Mungo, a special needs dentist from Huntington Beach around 8:00 this evening (he came to see Jenelle first in the hospital before agreeing that she needed the ambulance ride to his office!) Dr. Mungo said her teeth were fine (and actually complimented me on my brushing of her teeth, which I'm ashamed to say hasn't been too regular - Uncle Jim, please no brushing lectures! ;) He felt she did not need x-rays and that her teeth were fine. He said that some special needs kids have a difficult time with swollen gums due to their seizure meds, and often they need surgery to cut away the gum (apparently Dilantin and Phenobarb are the worse medications that cause this over time.) So for now, he felt the bacteria they found in her spinal fluid may have simply been a contaminant from an outside source. Either way, tomorrow will be the last day of her IV antibiotics, so they are going to complete the course and treat is as meningitis, then hopefully send us home! Better to finish the antibiotics than return here next week!

Jenelle is still not swallowing solids. I met with the dietician today who said Jenelle was definitely failing to thrive and that in her opinion, we should fatten her up before going back on the Ketogenic Diet. She recommended Pedisure and/or Carnation Instant Breakfast. Everyone also agrees that Jenelle will need a G-tube sooner rather than later. She can get the tube which will ensure she is getting ample nutrition, and continue to work with her therapy on swallowing. We have a GI appointment next week, so I'm sure those issues will be addressed.

I've decided that hospital rooms are actually just glorified waiting rooms. You know how you always wait to see a doctor, sometimes over an hour? Well, all you do in a hospital is wait… wait for the resident to look at the results, wait for the doctor to put in the order, wait for the pharmacy to send up the meds. Like I said, "glorified" waiting room, yet fully equipped with TV and pull out bed! I guess I'm slightly loosing my sanity, but hey, at least in our private room I get the TV all to myself!

Thanks for the continued prayers - I'll keep you posted, and hopefully next update will be from home!

Monday, May 16, 2005

Still at CHOC!

We're still at CHOC! It will be a week tomorrow. Dr. Kim (another CHOC Neurologist) saw Jenelle this morning, and after speaking with me, he said he was unaware that Jenelle had an "unresolved" urinary tract infection two weeks ago (remember her allergy to Keflex and our last ER adventure?) Based on this information, Dr. Kim diagnosed Jenelle with bacterial meningitis later in the evening after the culture on the spinal tap was conclusive. Another IV antibiotic was added tonight (she was placed on a different one Sunday) and we will be here at least to Wednesday for her to finish her course of IV antibiotics. Better to be here longer, than to be back again next week! Looks like a mild case of meningitis, and that we caught it in time.

Jenelle is back to her usual self, with exception of her eating, she is still refusing solid food. Part of this could be having a tube down her throat for 4 days, and that she still may not be well. However, today I contacted the Occupational Therapist who ran her "swallow study" a month ago for her assistance, and she is going to take advantage of our being her and see if she can help Jenelle eat more. Looks like a G-tube is indefinite, but it may be a few more weeks.

Other good news is that Jenelle's seizures are under control, and back to what they were before starting the Ketogenic Diet. In the ER, they started IV Dilantin to help keep her seizures at bay, and we are currently weaning that drug and will be off of it by the time we are sent home. With the IV antibiotics she is currently getting, they can lower her seizure threshold, so they are weaning the Dilantin slowly.

Thanks for the continued prayers - I'll continue to keep you posted!

Sunday, May 15, 2005

Spinal Tap Results

I went to my office briefly this morning to drop off some work and go through office stuff. On my way in, Brett called to inform me that the doctor came to see Jenelle after I left. Apparently there is a "growth" from the culture of her spinal fluid taken from the spinal tap a few days ago. They need to allow this growth (most likely a contaminant and/or bacteria) to grow more to further figure out what it is, but in the mean time will be treating Jenelle with antibiotics as if it were meningitis. Jenelle is alert again today but not really wanting to eat solids. She is sleeping a lot, which is probably best since she is fighting a major infection. Until she can take her medicine with her food by mouth, we'll be needing the nose tube, and thus will still be in the hospital. They are shooting for Tuesday at the earliest to get her out - we're hoping to make our appointment with Dr. Shields on Thursday (please say a special prayer for that!)

Thanks again for the continued prayers - I'll keep you posted!

Finally out of the PICU!

Finally, Jenelle is out of PICU! It has been a very long week with lots of ups and downs – here are the details. Last Tuesday morning, just after arriving at work, Jenelle’s school called to report that Jenelle had vomited. I was immediately concerned because on the Ketogenic Diet, a meal is like medication, and Jenelle had just received her seizure meds in the morning meal. Grandma Curran picked her up from school, and I met them at Grandmas,where I gave her Diastat (her emergency seizure med) to help her cope without her morning meds. I then took Jenelle home where she napped for 3 hours. After that nap she woke with a fever of 102. I had been on the phone with our Pediatrician and UCLA, and knew we may end up in emergency (we were trying our hardest to avoid it.) I spoke again to UCLA around 4:00, when Jenelle started having another lengthy seizure. UCLA instructed me to go to the ER.

At the ER, they ran the usual blood and urine tests, which strangely enough were normal. However, around 7:30, Jenelle started having many long seizures one after the other, and in front of the ER doctor. We went from thinking we had a slim chance of going home that night to being admitted straight to the PICU. When they transported her to PICU, she had blow by oxygen through her nose, and a crash cart in the bed - just as a “precaution.” That was a scary first for us, and to be quite honest, it was the first time I have ever thought that we may lose her.

The PICU is not a pleasant place, although the nurses and doctors are simply amazing. The resident doctor had been in touch with UCLA, and had instructions on how to keep Jenelle going on the Ketogenic Diet with replacement meals and glucose free IV fluids. All was going well that night, and on Wednesday, Jenelle became really lethargic and non-responsive. After an EEG, we knew we were staying another night in PICU. Thursday morning, things looked great and Jenelle was slightly more alert and holding down some Keto formula and water. She already had a “NG” tube placed through her nose to administer her meds, and we assume the tummy virus and missed meds threw her seizures out of control. Again, we were told that we were heading out of the PICU, until Jenelle started vomiting again. At this point, I consulted with UCLA, and we decided to discontinue the diet until she could get better. We have an appointment with Dr. Shields this coming Thursday, so we will discuss everything that has happened this week and about when we can start the diet again. Because she has already been on it, we will not need to hospitalize her again to start.

So, Friday comes around, and Jenelle is again holding down water and J-ello, and again we get the word that we are heading out of PICU. Just as we found a bed around 5:30 that evening, Jenelle had a seizure lasting almost 6 minutes, followed by many more long ones. So, we are staying in the PICU for another night! Friday was a difficult day as one of the other patients in the PICU passed away. It was an incredibly sad experience to witness, and my heart and prayers go out to the family.

Today was a new day, and instead of vomiting and/or long seizures, Jenelle was more alert, but also “gassy” and uncomfortable to the point of tears. Poor kid can’t get a break! She was able to hold down some milk today and was finally released to the “Neuro” ward on the 5th floor around 6:30. Our goals for tomorrow are to get her off the IV fluids, and onto some solids. If she can manage the solids and maintain her usual seizure baseline, we “may” get to come home tomorrow. Realistically though, it is looking like Monday.

Thank you again for the continued prayers. Please pray that she can start holding down some solid food so we can go home! I’ll keep you posted!

P.S. - Thanks to many of you who have sended responses to my updates. With the slow dial up at the hospital, I have been limited on responding, but please know that they all mean so very much and help keep me going! And thanks to all of you who haven't responded but I know are thinking of us too! We feel your love and support and it means so very much!

Friday, May 13, 2005

Bad day - need to talk it out...

This is not one of my usual "Jenelle" email updates... I just need to talk I guess. One of our neighbors in the PICU died this afternoon. You cannot imagine the horrible sense of sadness there is around here with the day shift. Then the night shift came on and it is now just another day.

I saw something I never imagined. The whole time, I was wondering how they were going to remove the body. Then I saw two "transport" team members pulling a tiny red wagon, with a child size doll with a happy face on top of what looked like bundles of blankets or pillows. It was just like the wagon we used a year ago to pull Jenelle around outside the hospital grounds. About 10 minutes later, the wagon returned and the transport person put the "doll" back into the back room, and removed what appeared to be bedsheets. I guess that is how it should be done in a children's hospital.

I know the child was a boy, but I'm not sure what his problems were. I think he was on a vent. The doctors were less quiet when discussing the death with the priest that came for the family, but the PICU is so loud anyway, I didn't hear it all. Then the mother had to walk past other beds like ours in order to leave, seeing other children, and only holding her child's blanket. I had Jenelle in my arms as she passed, and I swear she gave me an angry look. Who could blame her, my child is alive in my arms, while hers was carted away in a red wagon.

We're still here in the PICU. We were actually waiting to be transferred to a room upstairs when Jenelle decided to have a 6 minute seizure. She's had more since, so we aren't moving tonight. I'm really ready to go home - with Jenelle! Tuesday was the first time I ever really thought we might lose her now. I realize she may not live long and I've accepted that, but I'm not ready to lose her yet. Other than the seizures, she has had a great day. Please pray we go home soon. I can't take much more of this place.

Jenelle is still in the PICU

Just sending another brief update. Jenelle is still in the ICU. Thursday morning it looked like we were going to head home straight from the ICU as she was able to hold down some formula Wednesday – however, at around 11:00, Jenelle started vomiting again, and then became very non-responsive, sleeping all day. A feeding tube was inserted through her nose on Wednesday, and it has been a useful way to get down her meds until the vomiting returned. She has actually pulled it out a couple of times - she's a fighter! When she started sleeping so much yesterday, it reminded Brett and I of the time she was in sub-clinical status, so an EEG was ordered. Jenelle was having sub-clinical seizures (ie: seizures that are not visibly noticeable) but luckily was not in status (constant seizure state.) Jenelle has been at CHOC, and Thursday we got to see her “first” Neurologist Dr. Phillips. He got in touch with UCLA, and made a plan for what to do from here.

In order to “wake her up”, Jenelle is coming off the diet (which we had been able to maintain until the increased seizures and vomiting Thursday.) UCLA tells me this is temporary, until she gets healthy again. She is getting increased doses of a drug called Dilantin in order to stop the sub-clinical seizures. She had a CT scan and spinal tap yesterday, both of which were normal. Basically we are ruling out infection and/or meningitis. She is still pretty sick, we hope with just the flu. If she does not improve by Friday morning, UCLA may request she be transferred to their hospital for further treatment.

I’ve been staying at her bedside, and Brett is home with Jack. We are trying to keep his routine as normal as possible. Thank you for the extra prayers – please keep them coming! I’ll keep you posted when I can!

Wednesday, May 11, 2005

Jenelle is sick and in the hospital

I just wanted to send a quick email to let everyone know that Jenelle was admitted to the Peds ICU last night and may be in ICU until tomorrow, and the hospital till Friday. She had some vomiting yesterday with a high fever, which of course left her without seizure meds. Her seizures went out of control in the ER so they sent her straight to ICU for monitoring. She is still not holding down anything, but it being hydrated via IV. She may need a feeding tube through the nose this afternoon if I can't get her to eat. I'm sending this from home as I grab a quick shower, and do not have computer or cell phone access in ICU, obviously.

I will update when I can, which may be when we get home. We appreciate your thoughts and prayers, especially that she can start holding down some liquids and food. We think she just has the stomach virus going around right now.

Monday, May 09, 2005

Happy Mother's Day!

Well, this weekend is Mother's Day and it really came up rather quickly for me this year. Erma Bombeck always reminds me of my dear Aunt Onie, who loves her writings so very much. I agree that sometimes Erma just seems to say the right thing in the right way (with humor of course!) I think I've passed this along before to some of you, or maybe you've seen it on our family website or from some other source, but I thought I'd share my favorite Erma Bombeck writing about "special" Moms in honor of Mother's Day.
I must note that I disagree with Erma on one part of this piece - we (special needs moms) are not saints, we are just doing what any parent would do. For the most part, Erma has perfectly described all that God has shown me in my very special daughter.

Enjoy and Happy Mother's Day!

The Special Mom by Erma Bombeck, 1980

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew.
Forrest, Marjorie, daughter, patron saint, Cecilia.
Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."

Thursday, May 05, 2005

Jenelle's Kidney Doctor follow up

Jenelle is doing much better than she was on Monday with her allergic reaction. I still see some rash on her body, but very minor and she does not seem as agitated which is good. We met with Dr. Ben-Ezer yesterday as our follow up and I mentioned the second UTI. Dr. Ben-Ezer agreed it was a good idea to follow through with the Kidney Reflux testing (ultra sound and something called a VCVG.) I have now been "educated" about Kidney Reflux since my last update, and basically it is where urine from the bladder backs up into the kidneys. It can happen for various reasons, and at its worst, can damage kidneys. It will be good to test for this. Dr. Ben-Ezer is also increasing Jenelle's Bi-Carb supplement to 16mls three times a day. I was not happy to hear that as this stuff tastes like Baking Soda (imagine trying to force that down your child three times a day) but agree it seems to be helping her acidosis. Her last level was a 19, which is still low (minimum normal level is 24), but for a child on the Ketogenic Diet it is good!

Prior to meeting with Dr. Ben-Ezer, we met with Jenelle's teachers at the Blind Children's Learning Center to discuss Jenelle's progress (our usual 6 month meeting to discuss goals and such.) Usually these meetings are so grim when you see on paper that your child is still at the development level of a 3 month old, but Jenelle's teachers actually had a lot of good news about her progress to report and they were very excited about Jenelle's overall accomplishments and recent changes due to the diet. Still, on paper, she hasn't improved much, but she is on her way! The other difficult part of evaluating a child like Jenelle is that her vision problems make her score lower on the standardized tests. Compared to a sighted child, she is very behind, but when you take into account that she is blind, you realize she has made great strides. When Jenelle turns 3 in October, she will be turned over from Regional Center to our local school district as far as management of her therapies and social services are concerned. We discussed this in detail and started to think about goals for her upcoming transition. Hopefully our school district will continue to keep her at Blind Children's where she is getting the best therapy based on her limited vision - however, that may not be possible. A lot of things need to happen in the coming months, and hopefully with the seizure control we are now seeing from the diet, Jenelle's progress will continue to improve!

As far as the diet is concerned - so far, so good! I continue to see fewer seizures and when she does have them, they are very, very short. She still does not like her food, but I spoke with the Dietician at UCLA on Tuesday, and we are changing her meals a little to see if that will help along with adding carbohydrates to lower her ketones (which are still elevated to the max.) Worst case scenario is that we could put Jenelle on straight Keto formula, but then she wouldn't get to eat food and may lose the few chewing skills she has mastered. Please send some extra "eat the yucky food" vibes for Jenelle as that may help too!

That is all for now - I'll keep you posted! Thank you for the continued prayers.

Tuesday, May 03, 2005

Long overdue update...

Yes, I realize I promised an update after our appointment last Thursday with Dr. Shields but, this has been one of those crazy weeks where things change by the minute! Well, here goes…

First and most importantly, Jenelle continues to do well seizure wise! She still has some, but her daily amount has reduced significantly. I check Jenelle's urine daily for Ketones, and once a week for other things like blood and/or protein. Last Wednesday night, I checked for "other" things and Jenelle's urine tested positive for blood. This surprised me a little because she was acting fine, so I called UCLA and they determined that we had caught a urinary tract infection in the very early stages. I took Jenelle on Thursday to our Pediatrician to confirm it, and by that point, there was actual blood in her diaper, so we started an antibiotic that Jenelle has previously taken before called Keflex. Considering the infection she was fighting, Jenelle's seizures were increased slightly, but still the daily amount was low.

Thursday afternoon we made our trip to UCLA for our follow up with Dr. Shields. He was very pleased with the subtle changes we are seeing in Jenelle and feels we need to play with the diet a little more to help get her to eat the food. We are going to slowly add more carbs each day until we can keep her ketones at a lower level to see if it makes a difference without adding seizures. They looked at her infected IV site as well, and gave us some special dressing to put on the sores to help them heal faster. We'll check back with them in 3 weeks, and of course, I continue to talk to Nurse Sylvia almost on a daily basis - she has been such a help!

On Friday we had our follow up with Jenelle's GI Doctor. The results of the Upper GI were fine and there is no blockage, however Jenelle may be headed for a G-Tube because she is considered "at risk" for aspiration of food due to her low muscle tone. They want to try more therapy first to see if that helps her swallowing, and they think the G-tube issue is something we can discuss again later in a few months. Also, Jenelle has officially fallen off the chart in weight, and is now considered "failure to thrive." Hopefully the high fat content of the diet will help, but this may be another reason for the G-tube, to see that she continues to get the proper nutrition. I mentioned Jenelle's two UTIs, and they asked me to relay the information to our kidney doctor as this could be a sign of a condition called "kidney reflux." I'm not exactly sure what that is, but I know it is not good. We see the Kidney Doctor next week, so that is good timing.

Friday afternoon, I realized that I hadn't been giving Jenelle the right amount of food, and in some instances, have been giving her only a half of meal instead of a full meal. I called UCLA to break the news, and they told me to hold off on adding more carbohydrates until Jenelle was getting full meals for at least two days. I feel horrible, but at least it didn't hurt her ketosis. The unfortunate part of all this is that now I have to "force" feed Jenelle even more of the food she already hates! Not fun, but we must give this our best effort!

Our weekend was busy as we babysat our nephew Trevor on Saturday and Sunday. Trevor is 6 months younger than Jack, and the two love to play together. For those who don't know Trevor personally, Grandpa Curran has nicknamed him "full time" (as in it takes your "full time" attention to watch him because he is so active!) We were very tired as Sunday evening came around and Jack cried when Trevor had to leave. After Trevor went home, I noticed that Jenelle's face was starting to look red with hives. She kept rubbing her face and was obviously distressed. I kept an eye on her and as the rash kept getting worse, I realized she was having an allergic reaction to something. I gave her a dose of Benedryl and called the on-call Pediatrician. At this point, it was almost 11:00 at night. We watched her throughout the night to make sure she wasn't having a problem breathing. She seemed fine, and slept very well after the Benedryl. When I woke her yesterday morning she rolled over to show me that her face was red, swollen and her right eye was almost completely shut! Off to the ER we went!

Once we got to the ER, the good news was that she was breathing fine. After I removed her clothes, we noticed a red dotted rash everywhere. They gave her IV fluids, IV Benedryl, Prednisone, and Zantac and after a few hours, she looked much better and I could see her pretty eyes again.
The ER doctor determined she had an allergic reaction to the Keflex we started last Thursday, and sent us home with more Prednisone, Benedryl and Zantac. Poor baby girl! However, the good news in all of this is that her seizures remained stable and she had very few overall! Normally, something like this would send her into a grand mal! Today she is doing great and looks practically normal, with only some puffiness around her eyes. Brett asked if I had taken a photo of her at her worst, and I told him "no way!" Not sure anyone would want to see a face like that!

So, things with the diet and seizures are going well - if only we could keep "other" things from happening to our girl, we would be fine! As always, she is a trooper. Thanks for the continued prayers and I'll update again as soon as I can!