Ryan's Blog

Surgery- tonsils and adenoids

2010-05-08T15:18:00.002-05:00

Ryan had surgery on Thursday May 6th to have his tonsils and adenoids removed. We also had blood drawn for allergy testing. We had to be at the surgery center at 7am. He got checked in- weight and height 38 lbs and 43 inches. His oxygen levels surprised me that they were only 95%. Daddy walked Ryan back to the OR and stayed with him until he fell asleep- It was only a matter of seconds before RJ returned. About 20 minutes later the surgeon came to talk to us- he was already done! He said that Ryan's adenoids were HUGE! His tonsils weren't as bad, but still needed to come out. His lab work for allergy testing should be back in a week or so. Then about 30 minutes later we got to see Ryan. They brought him to us in this oversized padded wagon- he was sleepy and had his hands behind his head as he always does when he sleeps. He cuddled up in daddy's arms and dozed off and on. Finally he took a freezie pop and some water. He was pretty sleepy. Daddy left and got Ryan a new toy- a bobcat with tracks- not wheels- Ryan's request. Ryan hasn't let go out it since. Each day he is getting a little better. He can be strong willed when not wanting to drink or take pain meds, but figures out quickly that they do help. I am looking forward to him breathing easier- his oxygen levels after surgery were 98%. I hope that he is able to be more rested also. He is my trooper- it is amazing how kids bounce back from things and keep on going.

Time to update!

2010-04-11T14:28:00.002-05:00

First the good news... Ryan is doing well! He is now 4 yrs 1 1/2 months old- how does time fly! Ryan has been attending Sunday School and seems to really enjoy going. We tried karate and decided that he doesn't like it. He also just recently found out he will be a big brother to a sister! Somedays he wishes baby was a boy, but seems to be pretty excited about being a big brother. We are very excited to be bringing this blessing into our lives in Aug.!

And now the medical- unfun stuff.... Ryan had been saying "what" alot and I figured it was a boy thing and because of his dad's hearing loss was picking up on the habit of saying what. Just to be safe I decided he should get his hearing checked. We also have noticed every since very little that Ryan snores- quite well! One night he fell asleep on the living room floor before bedtime and I noticed he was actually obstructing his airway and waking himself up to take a breath. So, it was time for an ENT appoint. First Ryan had his hearing checked and for the most part was pretty cooperative- everytime he heard a beep he had to put a peg into a hole. This is when we learned that yes Ryan has some hearing loss. He is unable to hear some of the low tones, most likely due to chronic fluid in his ears when little. He doesn't have fluid in them now, which is a good thing. We meet with the ENT dr and he checked Ryan over. To my surprise his tonsils are pretty big and before we knew it we were scheduling Ryan for surgery. Ryan will be having his adenoids and tonsils out on May 6th. I am hoping that things will be much better for him afterwards. Ryan can be pretty hyper at times and this could actually be from lack of good quality sleep- or just that he is an active 4 yr old boy!

Ryan is outside playing as I type and I must go check on him!!! I will update after his surgery!

GREAT NEWS!!!

2009-08-12T17:35:00.002-05:00

Ryan is officially done with physical therapy and his neurologist, who we saw on 8/11, no longer feels that we need to continue under his care!!!! I am very happy about this! Aug. 14th will mark 2 years since Ryan's last seizure and all the things he has to indure. It will be nice not having to go to PT 2 times a week. The neurologist did tell me to watch for any problems that might come up when starts school-he said at 2nd grade if there is any learning problems or other issues to make sure we call him right away. So, we have one more appointment in Dec. with the Rehab dr. and then I am hoping this will be the end of this long road! Ryan is doing great- he still has a few things that we will continue to work on- strengthening his ankles, throwing a ball.

Yikes it has been a long time!

2009-07-27T16:15:00.002-05:00

But I do think that it is a good thing I haven't updated for such a long time! Ryan is doing very well! We went to his Rehab appointment in June thinking he would need shorter braces and the dr. decided to only keep him in his orthotics that just go in his shoes to help with being flat foot. So, no braces up to his ankles- yeah! The Rehab dr also decided instead of every seeing him every 3 months we now can go to every 6 months! We are still doing PT, but very close to graduating! We went on a bike ride the other day and when we got back I realized that we had gone 1 1/2 miles!!! His little legs were going around and around so fast! This is amazing since a year ago, just walking was a very tiring task! We go to see the neurologist Aug. 11th and I am guessing that he will say we no longer need to come see him! It has been almost two years since Ryan's last seizure!!!! (Aug. 14th, 2007). Ryan has been enjoying the summer riding his bike and going swimming. He is 3 1/2 and is in the testing stage- he keeps his mom and dad constantly evaluating their parenting techniques! I will update again when we see the neurologist and when Ryan graduates from PT!!!!

Update

2009-05-07T00:53:00.003-05:00

Ryan has continued to do very well with potty training! I can safely say that he is fully potty trained! We were told last Thursday that Ryan will be getting another 6 months of physical therapy. They want to continue to work on strengthening and improving his balance/coordination. I was a little sad that they decided he needs more PT, but know this is what he needs. He could possibly not need the full 6 months though. Ryan and I will be going to Michigan to meet some mommies of other Feb 2006 babies (now 3 yr olds) that I have chatted on the internet for the last 4 years! We are flying and I am very excited! We will only be going Fri- Sun, but it will be a fun trip! There will be 6-8 other moms and their kids! Ryan is loving that it is spring and can't get enough of being outside. Since he has been more active we have made 2 trips to Great steps in the last 3 weeks due to him getting blisters from his braces. So, Great steps has been doing adjustments and we hope that his feet will get better. He has been limping slightly in the last 3 days, I am guessing from his feet being sore, but we will continue to watch that. I must get to bed, work tomorrow and then off to Michigan on Friday!

It has been much too long since I updated!

2009-04-18T12:16:00.004-05:00

Ryan has some big news! He has been in big boy underwear for 8 days and nights now!!! He does have an accident here and there, but is doing very very well! He was dry all day and night yesterday! We are very proud of him! Ryan has been going to OT since March (has gone 4 times for a hour) and has had some big improvements! He is sleeping through the night- mommy and daddy are very happy. His behaviors and sensory issues are much much better also! I am glad we decided to keep that appointment. Ryan continues with PT 2 times a week for 3o minutes each time. I am hoping that he soon will not need as much- would like to get him in a swimming class this summer. Ryan had his ECHO done aboout 3 weeks ago with normal results, so we will not be doing anymore testing on him unless something else changes. It is a little frustrating not to have a confirmed diagnosis- even though I know we will probably never will. It is hard not knowing the whys, hows, whats. I am happy that whatever happened is on the mild side and he is doing well. Ryan had a Rehab appointment a month ago, and the dr felt he may need some sort of brace/support for his ankles and legs for life, but doesn't feel that he will need as much as he has now. I am hoping at his next appt in June that he will be able to get a shorter brace that will still give him ankle support, but doesn't go all the way to his knees. Ryan is very flexible and has loose joints, so he does need some support so his ankles don't give out. Well, it is time to get him some lunch- just wanted to get an update on here!

Genetic Appointment

2009-03-03T15:30:00.002-06:00

We had Ryan's genetic appointment today and it went very well. Ryan has improved greatly over the last few months and even weeks. A family history was done and then she did a physical exam on Ryan. She asked us "why we were there" We had been told by the neurologist and rehab doctors that we should really get genetic testing done. The geneticist said that Ryan has "out grown" his hypotonia- although feels that he probably did not have this to begin with. Ryan is flexible and the geneticist feels that Ryan actually has some mild connective tissue problem and that is what we are seeing with his walking. She told us that she feels "Ryan had a bad illness" and suffered side effects from that. The physical therapy has helped Ryan "rehab" from it and this is why we have seen such an improvement in him. I have always questioned if something happened after Ryan's 3rd seizure. So we did not do any genetic testing- lab work on Ryan. He will need an ECHO- ultrasound of his heart in the future (will be planning on Aug) to make sure his connective tissue problem has not effected his heart. If it is normal, we will not being having any more appointments. If it is even on the higher side of normal, we will go back to the geneticist to look more at his connective tissue problem. We are very happy with this appointment. Ryan is neurologically on track and a smart kid. She told us that he is a "normal" 3 year old and to start treating him that way. We have found that the doctors and us have been over analyzing everything and anything about Ryan. SO, we are moving on- the past is the past! I am thinking about cancelling his OT eval, wondering if we have noticed sensory things that really aren't a problem as much as we have paid attention too. He will soon get his 6 month eval from PT. I am thinking he will have less or no PT after that. It is a relief for us.

Happy 3rd Birthday Ryan!

2009-02-19T19:26:00.001-06:00

How did you get to be 3 years old already!?! You continue to make us laugh daily and amaze us! You are the joy of our lives! We love you "peanut butter"!

Ryan will be having his birthday party on Sunday- he is going bowling! He requested a John Deere birthday cake, which he will be getting. I will post some pictures of the big day.

Some updates on Ryan

2009-02-17T18:15:00.003-06:00

Ryan has been having an evaluation done by Early Childhood Intervention (Child Link). Today, we got the results back. Ryan is average to above average on his communication and cognitive skills. His fine and gross motor are below average, which we already knew. Although, he is not below average enough to qualify for free services. So, we will continue to do private physical therapy. Ryan has some troubles with adaptive behavior- he has what is called sensory defensiveness. Ryan has trouble with being overstimulated- by noise, busy, crowded areas. He also gets overstimulated by things on his skin. Ryan moves from one thing to another frequently because he gets fatigued/ and or struggles with being over stimulated. He will be getting an OT eval on March 5th to get some ideas on how to help Ryan with this. He continues to be a very fun loving, happy boy! We recently also learned that Ryan does have a diagnosis of epilepsy- which I did not know until getting his neurologists' notes. I questioned this when I saw it written. It has been frustrating to try and figure out the why's and how's, especially when the doctors don't tell us things! I asked the neurologist about this and the reason for why we didn't see problems with Ryan's tone sooner. I was told because he has had more than one seizure- that qualifies as a seizure disorder, but in the long run hopefully it won't mean anything at all. The neurologist feels Ryan could possibly have a neurological disorder that took time to progress for us to see the hypotonia. Thankfully, Ryan has responded very well to physical therapy. We have a very busy March coming up with dr appt and PT/OT. I will try to keep this updated.

18 Months Seizure FREE!

2009-02-14T19:23:00.000-06:00

18 months ago at 17 1/2 months, Ryan had his last seizure! This is huge! We are hoping this means Ryan has out grown them and we won't see anymore. Ryan has been off his seizure med for 3 months now.

Bob the Builder Live

2009-01-31T19:00:00.002-06:00

Ryan, Grandma Best and Mommy went to see Bob the Builder Live for an early birthday present to Ryan. He had a lot of fun and asks to go back and see it again. They were really strict about taking pictures- so I had to be sneaky and get a few quickly.

A Smart one!

2009-01-20T16:00:00.000-06:00

We continue to work with Child link to assess where Ryan is at. Well, this is one smart little boy!!! He had his cognitive eval and blew us and the therapist away. He is doing things at a higher level than his age. We don't have the results back yet, but comments were made that he is doing things that not all kindergartners are able to do. I have to thank our daycare lady for this also- she has taught Ryan many things. Next week he has his fine and gross motor eval- which we know he will have more difficulty with.

Update on Ryan

2009-01-15T13:45:00.002-06:00

Well, I haven't done this lately and I have heard that I need to. Ryan continues to do well in many areas. He is a happy, fun loving, energetic little boy (who is almost 3- how did that happen?). He talks non-stop, guess that is one thing he got from me! He learns new things everyday and continues to amaze us! He is eating and growing like crazy! He continues to go to physical therapy 2 times a week to work on areas that continue to be weaker. He has improved greatly from physical therapy already! Physical therapy works on his upper arm, trunk, and leg strength. He gets to do lots of fun things there and for the most part he likes going- somedays are better than others. He usually comes home tired. He is not liking his new braces right now and we are trying to improve that. He continues to be seizure free and off medication. We are working on potty training- somedays he does really well and others not so well. I don't believe his hypotonia has anything do with this, but it can cause problems in this area. I have found a hypotonia website that has given me a lot of helpful info and support. Ryan won't be having his genetic testing until March (soonest he can get in) and the results can take 4-8 weeks to get back.

Child Link Meeting

2009-01-06T18:50:00.002-06:00

We met with Child Link today (Early Childhood Intervention) to see what other ways we can help Ryan. This service is through the school system. We met with a nurse today, who took information about Ryan's health history. She then goes back to the rest of the team members (physical, speech, behavioral, etc therapists) and they decide what Ryan needs are. He will be evaluated on his development next Tuesday and the following Tuesday will have a meeting with the nurse, developmental therapist and physical therapist to develop the best plan for Ryan.

Ryan's new braces

2009-01-06T18:42:00.004-06:00

Ryan got his AFOs (ankle-foot orthotics) today. He so far is very excited about them.

Some fun pictures of Ryan

2008-12-31T16:30:00.001-06:00

Here are a few pictures from our trip to ND for Great Grandma's funeral.
Ryan and his favorite friend Walker (my cousin, Ryan wouldn't let him out of his sight!)

Ryan wearing Great Grandma's clip on earings!

All the snow that was at Great Grandma's house

So sweet- asleep on the way home

Christmas 2008

2008-12-27T00:05:00.002-06:00

Ryan had a blast opening the many, many, many toys that he received! I don't think he can say he has a favorite- he is playing with everything! We had Christmas Eve at Grandma and Grandpa Best's house with Tyson and Jennie and Mikki and Brad. We ate lots and had a good time. Christmas Day we spent with Grandma and Grandpa Beehler and family. Ryan came home with more- I don't know where it is all gonna go! We ate lots there too!

Some sad news

2008-12-22T07:30:00.001-06:00

Ryan's great grandma Huff died this morning in her sleep. We will miss her greatly, but find peace that she is in heaven watching over us. The funeral will be on Tuesday Dec. 30th. (pictures: Great Grandma Huff with Ryan for the first time, Great Grandma Huff's 80th birthday party)

Ryan had his AFO's made today

2008-12-17T11:09:00.002-06:00

We took Ryan to get his AFO braces made today. They make a cast of his leg, cut it off and then make the brace from the cast. Ryan did really well with it and got to pick out the design he wanted to have on the braces. He picked one with helicoptors, tractors, and trucks on it with a blue background. He will get his braces Jan 2nd.

Ryan's neurologist appt.

2008-12-13T17:00:00.001-06:00

Ryan has been off his anti-seizure med for 4 weeks now. He had an EEG done to make sure he has no seizure activity off of the med. His EEG came back normal. We talked to the neurologist also about doing genetic testing and he too felt it was a good idea- so we will be getting it done. Ryan doesn't have to see the neurologist until Aug 2009! Which as long as things go well, will be his 2 year seizure free anniversary!

Appt with Rehab Dr.

2008-12-11T17:00:00.000-06:00

Ryan had his follow up appt today with Rehab at Gillette. Ryan has been going to physical therapy for 3 months now. He has improved in a few areas- able to jump, ride a bike, but continues to struggle with walking. He continues to walk with his toes pointed inward and on his toes- doesn't put his heel completely down. He has been wearing braces inside his shoes, but they don't seem to be helping him. So at the appt. we talked about getting him new braces called AFO's. They go all the way up to his knees. Ryan walks with his hips instead of his thigh muscles. The braces are to help him walk on his foot instead of his toes. The problem with him walking on his toes is that his calf musclses ares starting to get tight. We will have to watch him closely with the new braces so that he is not losing more muscle and that they aren't causing more hip problems. We also talked about Ryan having genetic testing done to better determine why his is having hypotonia. Hypotonia is usually a sign or symptom of something else. The Dr. feels that even though all his tests and come back normal, Ryan could have a central nervous system problem.

Ryan visits Santa

2008-12-07T15:36:00.003-06:00

Ryan went to see Santa and Mrs. Claus on Saturday. They had breakfast with santa, crafts to make, coloring, santa's store, and a place to make and send a wish list. Ryan told santa he wanted a tractor. He had a good time.

Ryan's special "stickers"

2008-12-04T16:45:00.003-06:00

Ryan got special tape put on today at physical therapy. He wears it until it falls off. He is doing really well with it so far. It helps strengthen/ support his muscles. He is still in toeing alot and walking on his toes to compensate. So, we are hoping this will "wake up" those muscles.

DNA test results

2008-11-19T15:42:00.001-06:00

Ryan's genetic test results came back today as normal- so no chromosome problems.

On cloud 9!

2008-11-18T20:43:00.005-06:00

Ryan got to ride in the dump truck- dump dirt, ride in the backhoe- and dig dirt. He loved it!

All done with Keppra

2008-11-12T09:00:00.001-06:00

Ryan took his last dose of his seizure med last night. It feels really different not giving him medicine 2 times a day. We have been doing this for 15 months and I am so glad we are done.

Ryan's pumpkin

2008-10-31T01:41:00.009-05:00

Ryan and daddy had fun carving this pumpkin

Tough day

2008-10-28T19:01:00.002-05:00

Ryan is getting a cold and it really wipes him out. He had physical therapy this morning and was having a hard time walking. He was back to toe walking, dragging his feet, looking tired and weak, and tripping. He continued to do this the rest of the day. He has this other thing that he has started lately and that is taking his left shoe off. He leaves the right one on. Not sure why he is doing this- he doesn't say it hurts. I am going to ask PT about it on Thursday.

PT is helping!

2008-10-23T10:00:00.004-05:00

Ryan had physical therapy today and they are happy with his progress. He continues to improve weekly.

Weaning off Keppra!!!

2008-10-22T08:00:00.000-05:00

We have started to wean Ryan off his Keppra. We will cut his dose by a 3rd for the next 3 weeks and then he will competely off! We are to continue to monitor his fatigue and weakness to see this improves. He will be competely off by Nov. 12th and will have a repeat EEG Dec. 12 as a routine thing they do after stopping a med.

The results are in!

2008-10-21T10:18:00.003-05:00

I happy to report that Ryan's EKG, MRI of head & spine, and his EEG are all NORMAL!!! I have not gotten to talk to the neurologist yet, so I don't know the plan of weaning his anti-seizure med yet, but do know that we will now get him off his med! Yeah! The neurologist's nurse has to call me back when she gets the results of his blood work. One lab will not be back for about a month- so I won't know that one for awhile. Ryan is starting to show a little improvement from going to physical therapy and wearing orthotics. He is now able to ride a bike and can jump without needing help. There are still other areas to improve on, but we will get there. We are very happy with these results!

Got a call back from the neurologist's office and all the labs that are back are also NORMAL! We only have the one lab that takes a month to get back to wait for now. That lab is a DNA genetic test and that is why it will take longer.

Ryan's big day

2008-10-17T01:05:00.004-05:00

Today is Ryan's big day at Children's Hospital in Mpls. Ryan will have is EKG, MRI of head and spine, labs, and EEG done. I will update on how the day went when we get home.

We left at 6 am and got home at 7:15 pm- it has been a looong day! Ryan was a trooper! At 8:45 he had his EKG- I filled out the paperwork and RJ took him in the room to have it done. Ryan didn't mind it at all. Then we had to wait around until 9:30 to go get ready for his MRI of his head and spine. I used to work at the Children's hospital and haven't been there for 3 years, so everywhere we went I would run into someone I use to work with. It was really nice seeing them again. Ryan got his IV started and they drew 12mls of blood- he cried a little, but did very well. His MRI was suppose to start at 10:30, but it didn't until 10:50. Ryan was doing well with the waiting until about 5 minutes before and then he was running out of the room wanting juice and to go home. He didn't care that he had an IV in his arm. The last time he had anything to drink was 7am and hadn't eaten since 7:30 pm last night. He did very well with this. We took him in the MRI room and they gave him his sedation in his IV and he fell "asleep". RJ and I ran and got something to eat and 1 hour 30 minutes later he was done. It took Ryan a little longer to wake up than "normal", but I think he was tired from being up at 5:30am. Then we had to wait around until 2 pm for his EEG. He did very well with this also. We stopped on the way home and bought him a toy for doing such a good job. We also went out to eat- so we could have been home alittle earlier, but the thought of trying to find something to cook was not something I wanted to do. We should hear back about the MRI and EEG by Tuesday (that is a guess). They told us his EKG was perfectly normal- so no heart problems- yeah! The blood work, we will get some results right away, and others will take at least a month. He had some DNA (genetic) tests done and they take longer. I will be really surprised if anything is abnormal- I still believe his seizure med is to blame, also being sedated for 4 days and having drug withdrawls may have something do with his weakness and low tone. So I will update when we get the results back. Thank you for all keeping Ryan in your thoughts and prayers. I am relieved this day is over!

Foot Orthotics

2008-10-07T00:09:00.003-05:00

Ryan was fitted for foot orthotics and now he has to wear his shoes from breakfast to supper- this will be hardest for mom- allowing shoes on in the house.

Gillette Appt

2008-10-07T00:03:00.002-05:00

I am finally getting an update done. We had Ryan's appt at Gillette on Sept. 25th. We met with the Dr. who is medical director or Rehab- I have worked with him when I worked at Children's. He looked Ryan over and asked lots of questions about his medical history and ours. He agreed with everything we already know- low muscle tone, more flexible that he should be. He recommened foot orthotics (braces for his shoes) to help support his ankles. He wants the rest of his tests done and the results. We have an appt for follow up in 3 months or if something changes- sooner. So, we didn't learn anything new, but that is okay.

Potty Training

2008-09-19T10:39:00.001-05:00

We have started our 3 day potty training- wish us luck!

ETA: potty training didn't go so well- we will try again after things settle down a little- too many appts to go to right now!

CPK Result

2008-09-18T18:45:00.001-05:00

Ryan's result came back normal! His level is 97 and abnormal starts at 200. I am relieved to know that his muscle weakness it not due to muscle wasting and this rules out muslcar dystophy. His Gillette appt was made today- he will be seen Sept 25th. I am happy that we were able to get in so quickly!

What a trooper!!

2008-09-16T14:10:00.000-05:00

I am so proud of Ryan! Today Ryan had his CPK or CK blood level drawn and didn't even complain. He was so good- just sat there and watched the lady poke him and fill up the tube. He wanted to know what they were going to do with his blood. He is so smart. It will take a few days to get the results back.

Update

2008-09-12T09:14:00.003-05:00

I ended up calling Ryan's neurologist and we got him seen yesterday. We first went to PT and she confirmed that yes there is something wrong with Ryan. He has hypotonia (poor muscle tone) and not only is his legs weak, but his neck and arms are also weak. I felt good knowing I wasn't crazy. Ryan is also very flexible- more than he should be. We then went to his neurologist appt. and he actually spent time with us. He says this is not from his anti- seizure med and that we need to do some more testing to figure this out. So Ryan will be getting PT 2 times a week, braces for his feet, an MRI of his head and spine, an EKG- to make sure his heart muscles are okay, and EEG- to try and get him off his seizure med in case it is doing something, a whole bunch of labs- including genetic testing and to rule out Musclar dystophy, and will be going to Gillette Hopsital to see an Orthopedic dr. - to make sure it isn't anything from that point. At PT the therapist said Ryan is walking with his hips, not his thigh mucsles that is why he looks like he is walking inward. Ryan is doing a good job at compensating, so we don't always see the things with his arms and neck. RJ and I are a mess we are trying to take each day at a time. The thing that really sucks is his tests will not be done until Oct. 17th! That was the soonest they could get him in at the Children's hospital (where I use to work) for his MRI under sedation (which this what I use to do there). My brain is trying not to think the worst- but it is hard. I thank all of you very much for your thoughts and prayers! Ryan is doing great- he thought PT was fun- got to run around while we watched.

Walking problems

2008-09-09T17:09:00.002-05:00

I took Ryan in to the doctor today because he continues to have more and more problems with walking. He use to walk with his feet inward- which is a very common thing with kids when they first start walking and they usually grow out of it by 3 yrs. But now he is walking (when he does) on his toes or the front of his foot, at times will drag his feet (when he is tired), has now has started to trip more, and his feet are very inward now. He will walk short distances and then wants to be carried because he is tired. RJ and I and others have noticed a big change in the last 2 weeks. He is walking like he did when he very first learned how to walk. When he runs he has to use his arms a lot to keep his balance. He will be seen by physical therapy and I will know more from there, but our Dr. who I trust very much is worried that he is having muscle weakness that could be developing something as serious as muscular dystrophy. I am trying to not drive myself crazy with the what ifs. I haven't even looked anything up. I don't believe he could have MD. If he has to wear braces to fix this I will be more than happy with that if that is all it is. RJ and I have been watching this ever since he was hospitalized a year ago and just have felt something not "right".

One Year Ago...

2008-08-14T11:30:00.001-05:00

Ryan had his last seizure!!!! I am so happy that he has gone a year without having one. He is still on medication, but on such a low dose that if he was gonna have one, he would have by now. One year ago today, my little boy was on a vent. sedated- it brings back a lot of emotions.

Neurologist Appt.

2008-07-30T11:34:00.001-05:00

Ryan had his neurologist appt yesterday and things are looking very good. He goes back in Jan. 09 (6 months) and will have his EEG done and if that is normal he will go off his meds!!!! I know in my heart everything is okay and he will be/ is fine. I feel safe to say Aug. 14th he will be seizure free for 1 year. His dose has not changed since he was 18 months and he weighed 22 lbs. He is now 30lbs! He has gained 3 lbs in the last 6 months- I was shocked at this. He has always been a peanut. So in a way he is already weaning off the meds. We had a good day. We had a very nice brunch with my aunt before Ryan's appt. His appt is 1 1/2 hours away from home, near the Mall of America and Ikea, so we went there for awhile and then went to another aunt's house and went swimming in her in ground pool- very nice since it was 94 degrees with an heat index of 100! Before making the trip home. Just thought I'd update. Oh and I almost forgot the neurologist was very impressed with Ryan- said he was very smart and cute- melts my heart. I know that he really meant it and wasn't just saying- I used to work with this Dr. and he doesn't usually say much.

Neurologist Appt.

2008-01-30T11:41:00.001-06:00

We had Ryan's neurology appt yesterday. Last time we were there the Dr. said he felt Ryan would "grow out" of his seizures by age 2, so I was hoping we would start weaning him off his med. Well, he told us yesterday that he wants to keep him on it for another year. I was really bummed. We go back to see him in 6 months (July) if no seizures than we make another appt. for 6 months later and have an EEG and then he will decide to take him off his med. He wants him to be on meds. for 18 months since that was how old he was when he had his "bad" seizure. At least I know he has been seizure free for 5 months now and that is the important part. I just wish we didn't have to drive 3 hours to meet with the Dr. for 5 minutes to find out nothing has changed.

Neurologist

2007-08-29T16:51:00.002-05:00

I am happy to report went very well! He had his EEG redone- which he hated every minute of and then we met with the neurologist. His EEG was normal again- yeah! The Dr. explained it to us like this- 1 out of 50 kids have a seizure- 50% have no real reason why they had a seizure. This is Ryan. His brain is perfect! No problems with development, function, or abnormalities. He just has seizures when he is sick. The neurologist feels Ryan will outgrow them by at 2. Ryan will stay on his anti-seizure med to prevent him from having a seizure when he gets sick- cold/flu season is right around the corner. He has an appt. 1/29/08 and if he is seizure free from now till then he will be taken off his med. Ryan has been such a good little boy these last few days! He is my life and I wouldn't know what to do without him! He did learn "Mine" today- which I thought you are soooo a toddler! Thank you for all your support, thoughts, prayers, well wishes!!!!!!!!!!! I appreciate them very much!

Follow up appt.

2007-08-28T11:53:00.000-05:00

Ryan had his follow up appt. today with our Pedi. He weighed 22 lbs. when we left the hospital (had gone in at 24lbs. 10oz). Today my little piglet weighed 25lbs. 10oz. He gained 3lbs 10 oz in 6 days!!!! I knew he was eating well, but goodness. He is still a little crabby, but the Dr. explained that he is pretty much going through something similiar to post traumatic stress disorder. Tomorrow he has is appt. with the neurologist and a repeat EEG, so the Pedi. said it will probably be pretty stressful on Ryan and he will be crabby for a while yet. We don't think it is related to his seizure med at this time. He can be very happy and playful, just when he wants something he has no patience and has a huge meltdown- not like Ryan. The Dr. said he probably regressed some too.

Update

2007-08-25T12:01:00.001-05:00

Ryan has been very whinny. Now, I know he is still recovering, but I am trying figure out what it is from. His anti-seizure med has a side effect of crabbiness which they told me to watch for. I can't decide if this is just a phase or if it could be from the med. He is sooo sensitive- even if I look at him wrong he whines. He is happy for the most part and has always been a happy kid. I am guessing it is because he is still recovering.

Home from the hospital

2007-08-22T16:49:00.003-05:00

He is HOME!!!!Ryan was discharge today at about 12:30. He is doing great! He is sleeping on the couch and he is oh so cute. So nice to see him there! I hope to get some pictures on here real soon! Oh- get this the meds Ryan has to have if he is having a seizure cost $279.00!!!! I almost fell over when they told me. This a one time dose that I give him if he should have another seizure. He is on anti-seizure meds so hopefully we won't ever have to use it. I was going to get 3 of them (one for our house, one for grandma's and one for daycare). But the cost of one is high enough. I have work off until Sept. 4th. RJ has the rest of the week off. Ryan has his dr. appt with his regular dr. on the 28th and then the big appt. with the ped. neurologist on the 29th- he will determine if Ryan has a seizure disorder or not.

Awake at 1 am

2007-08-22T12:00:00.001-05:00

Ryan is awake and eating- now normally I wouldn't be so happy about eating at 1 am, but anything to go home right now is fine by me. He woke up when they were doing his midnight vital signs and cried and cried. I couldn't figure out why he was so sad- well, 4 crackers and 1/2 carton of milk later and I have a much happier child.

A beter day

2007-08-21T11:58:00.001-05:00

Ryan continues to not want to eat or drink, but he is doing much better in other areas. He was feeding me his muffin this morning and getting his eggs on a spoon by himself. He stood up by himself and he is crawling. He has taken some steps, but with lots of help. His IV came out at 6 am and the dr. is going to let us leave it out until this evening in hopes he will start drinking. He isn't shakey anymore- huge relief! He hasn't talked yet, but is making noises. He doesn't like his room, his ID band or the nurses. I am feeling so much better than yesterday! So, now I ask that you guys help me cheer Ryan on- "lets drink, let's eat, so we can go home!"

A hard day (for mommy)

2007-08-20T11:56:00.001-05:00

I am having a hard day today. I was hoping when Ryan woke up this morning he would be less shakey- no such luck. I just want my baby back! I know it has only been 48 hours since he has been off the meds and had his breathing tube out, but this is going much too slow for me! Ryan isn't talking- makes a few noises here and there. He can't roll over, stand, sit up very long, and he has a very difficult time controlling his tongue. I keep feeling like I am going to take a completely different child home. They tell me he will get better and will be back to where he was developementaly before all of this- but it is very hard to believe. I try to stay strong for Ryan- because I know he needs that. I go home everyday to take a shower, feed the cats, and check on the house. Just to get out of the hospital for awhile. Maybe once PT/OT comes I will feel better.

Out of PICU

2007-08-19T16:48:00.003-05:00

Well, Ryan is 18 months old today. He was moved from the PICU to a regular peds. bed. He would not have been moved today, but he was doing well enough and a sicker kid needed his room. Ryan continues to go through withdrawls- spacey and shakey. He is getting better- it is just a slow process. He started drinking better today- makes us very happy to see. He is very weak and will start PT and OT tomorrow. He can hold his head up on his own, but needs lots of support to sit up. He tries to grab onto things, but isn't able to pick them up. Still not sure how long he will need to be in the hospital. He also has a very hard time falling alseep- part of the withdrawls. So, I layed him down and hopefully when I get back to his room from writing this he will be sleeping. RJ and I are starting to get a little testy with each other, but realize we are doing it and try to take it easy on each other. RJ is taking a nap with Ryan, so hopefully he won't be so crabby. That's all I know for now. I hope everyone else is doing well.

Extubated

2007-08-18T16:47:00.002-05:00

Ryan was extubated (breathing tube out) at 9:30 this morning!!! He is going through drug withdrawl and is pretty jumpy at any little stimuli. This will pass in a day or so. He will get to eat something later today. He is doing really well off of the vent. He is breathing really well. I am so happy to hold him my arms again! He will stay in the PICU until tomorrow and then will get moved to the reg. peds. floor. He will probably be there a day or two. I just took a quick break to update and eat. So, back to my little boy. Thanks for all the prayers- they really do help!

Update

2007-08-16T12:03:00.001-05:00

He has had a very good day- he has been able to rest and continues to get better. The dr. is thinking that he could possibly have his breathing tube out tomorrow evening or Sat. morning. Then he has to be okay for 24 hours with the tube out and he will get moved to a regular peds bed. Then he has to be strong enough to start eating again and back to himself. So, we will be here until next week, but we are making progress. I am just so glad that he rested today- yesterday it was 3-4 people holding him to the bed.

Code Blue

2007-08-16T08:00:00.001-05:00

We had a scary morning today- they ended up calling a code blue. Ryan's steriods are starting to work and because of this he has lots of room around the breathing tube. So instead of the air going to his lungs it was leaking out into his mouth/stomach. His oxygen sats dropped (60's) and then his heart rate dropped (80's). He should be 94 and above for his oxygen and 130's for his heart rate. The called a code blue and then took out his breathing tube since it wasn't doing any good and started bagging him. Because he is sedated he takes some breathes, but not enough. Thankfully we are right next to the NICU and the NP came and put a new breathing tube back in very quickly. He is back to his normal/good vital signs and sedated. They all did a very good job and I was very happy to have the night nurse we had- she is excellent!

Update

2007-08-15T19:00:00.000-05:00

First, THANK YOU all of you for all the well wishes and prayers! Ryan is about the same. He is starting to need more sedation and wakes up easily. He is very strong and takes 3-4 people to hold him still until they can give him more sedation. He pulled both IV's out- he had one in each hand and now has one in each foot. The neurologist came and we have started him on a low dose of anti-seizure med. He will be on this until we go home and then go to the Twin Cities to see a ped. neurologist who will repeat his EEG and decide if he needs to stay on the med. I am very tired- I have helped hold him down a lot.

Caringbridge site

2007-08-15T16:45:00.000-05:00

Dear Friends and Family, I created a CaringBridge site to keep you up to date on Ryan Beehler. CaringBridge is a nonprofit organization that helps friends and families stay connected.You can visit Ryan's CaringBridge site at http://javascript%3cb%3e%3c/b%3E:ol(.If your e-mail program does not allow you to click on the above link, just copy and paste the address into your web browser's address (or URL) location.Please visit our CaringBridge site anytime. You can use the site to check in on Ryan, read the journal entries and send us messages by signing our guestbook. When you register with CaringBridge and sign our guestbook, you will automatically receive e-mail notifications each time our journal is updated. Or, you can subscribe to receive these notifications even before you sign the guestbook. (Of course, you can unsubscribe from these e-mail updates at any time.) Please print and save this e-mail for future reference.CaringBridge is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery. http://javascript%3cb%3e%3c/b%3E:ol(

3rd seizure

2007-08-15T08:00:00.000-05:00

I don't know how to even start this- so here goes.
2:30 am Tuesday August 14, 2007 Ryan has a fever and a bad cough
6:30 am Tuesday Ryan continues with his fever and cough- made Dr. appt
10 am Dr. appt. Ryan has the beginnings of Croup (where your upper airway swells- barky cough) She sends us home with a steriod to help open his airway
2:30 pm Ryan cries everytime he coughs and is having a harder time breathing- I am having a very hard time getting meds and fluids in him
4:30 pm I decide it is time to take him to the ER- I wait 5-10 minutes for my dad to get home from work to come with me
4:42 pm- Ryan start to seize and I call 911
Ryan had a seizure for 20 minutes- they gave him medicine to stop the seizure, but because of his croup he is having a very hard time breathing. In the ER they decide it is best to put in a breathing tube, sedate him, and help him breathe. So, we are in the ICU and Ryan continues to be sedated and on a ventilator. He had a good night and now we need the swelling in his upper airway to heal. The neurologist will come see him today and decide what needs to be done about his seizures. I am sick to my stomach trying to keep it together. Please keep us in your thoughts and prayers.

My perfect little boy!

2007-08-08T17:59:00.001-05:00

Ryan's EGG and MRI are NORMAL!!!! So, his seizure were just febrile seizures and nothing else. I am so relieved! Thank you to everyone who kept us in their thoughts and prayers!

EEG

2007-07-31T17:58:00.002-05:00

Ryan had his EEG today. We got up at 4 am and had to stay awake unitl 7:15 for the appt. He did really well. I won't find out the results until the end of this week. I haven't heard when the MRI is and I will be calling them today to find out what is going on with insurance.

Met with the peds dr.

2007-07-25T17:55:00.002-05:00

We went to see a Pedi. at 11 and I am still a little numb about what we decided to do. Ryan will have an EEG and a MRI done. I am glad something is being done, but kinda scared at why it is being done. His Dr. is concerned about the type of seizures he has had and think we need to check things out some more. When Ryan has a seizure his eyes have gone up and to the left- this doesn't normally happen with a febrile seizure. She is also concerned with the onset of his seizures- usually with a febrile seizure the child is sick first- Ryan has not be sick until after his seizure. I am sad that Ryan will have to be sedated to have his MRI, but as a nurse who use to do the sedation, I know it is a routine easy thing to do. The clinic has to call me when the EEG is scheduled and the MRI has to be approved by insurance first, so I don't know when all of it will be done yet. If Ryan is to have another seizure lasting more than 2 minutes we are to call 911. I really hope we don't have to think about that. I felt very comfortable with this dr.- she sat and talked with me for almost an hour! Ryan is back to his usual self- going after the cats and messing up the house!

Update

2007-07-24T17:53:00.002-05:00

I will know more tomorrow hopefully when I take him to the pedi at 11am. He is finally acting like himself again- takes him 2-3 days to recover. I got out my ped nursing book and a couple other books I have and I am not as freaked out. But, I still have one big question and that is why is he having a seizure at such low temp.? Everything I read said that they don't usually have a seizure unless they are 102 or higher. Ryan was 99.2 and 100.4. Doesn't make sense. He had a rash on his tummy and neck last night, but that has gone away.

2nd seizure

2007-07-20T16:36:00.002-05:00

I went to work Friday at 2:30 and by 4pm my daycare lady was calling me with news I didn't want to hear. Ryan had his second seizure- febrile. I left work and brought him to the ER. Where we waited for 2 1/2 hours to before a doctor saw him! His temp. was 100.4 by ear at daycare. I gave him some tylenol before we left daycare. At the ER he was 99.2, but 2 hours later he was 100 again. Which isn't very high, but Ryan apparently has a very low tolerance. He still isn't 100% back to himself. The Dr. said he probably has something viral and if he has a seizure again I can just watch him at home- that I didn't have to bring him in. I don't know how I feel about all this. I know this is a common childhood thing, but I feel like it shouldn't be just brushed off like it is no big deal. I am worried about my little boy! I have been just taking him to family practice dr. , but tomorrow I am getting him a peds dr. I need to know that this is just a febrile seizure nothing else. They did no tests at the ER.

Update-15 months old

2007-05-22T17:53:00.002-05:00

We are back from his appt. and everything went well. He is still my peanut. 22 lbs. 6oz and 31 inches. His development score showed him doing things at 18 month level! He got two shots- did pretty well. His right ear that has been red (not infected) for months now finally cleared up- very happy about not needing tubes!

Update

2007-04-10T17:47:00.001-05:00

Ryan's appt. went well. We are to continue his antibiotics for pneumonia and just keep an eye on him. He hasn't had a fever since Sun. He does act like he doesn't feel the greatest. He has a runny nose and gets tired easily. I wish we would get some warm weather, so he can get over all this yuck! We are suppose to get 6 more inches of snow by tomorrow- grrr

1st seizure

2007-04-07T18:00:00.002-05:00

Sat. started out a normal day and ended in the ER. We went to RJ's family for Easter lunch. Ryan ran around, played with the cousins, and ate an okay lunch. Then we went to my parents' house for Easter supper. Ryan was getting crabby and I thought it was because he was getting hungry. I put him in his highchair. RJ was sitting next to Ryan and feeding him supper. He acted like he was done eating and getting fussy. I gave him a spoon to keep him happy until we were done eating. 10 seconds later my sister said what is he doing? I looked over and he was having a grand mal seizure in his highchair! I took him out and started doing back thruts, not sure if he was choking or not. I laid him on the floor and he continue to seize. His eyes were rolled back and to the right, he was arching his back and his arms and legs were straight out and shaking. RJ called 911 and they came very quickly and took him to the hospital. Ryan has been healthy. They took blood, started an IV, put a bag on him to get urine and took an x-ray. He has pneumonia. He had a febrile seizure- he temp was only 99.3 under the arm at home after his seizure and 101.2 rectal at the hospital. He came home that night and is on antiboitics. RJ said it took 15 years off his life- he was pretty scared. I thankfully have seen seizures before, eventhough it was MY son having one, I kept it together until we got to the hospital- then I was in the bathroom- sick to my stomach. I took work off today and we have been sleeping together on the living room floor. He gets around the clock Tylenol and Motrin for 48 hours. He started coughing today and is stuffed up. He goes in for a Dr. appt. tomorrow. I am a paranoid mom now- watching him and feeling him to see if he is even a little warm. He even knows what to do with the thermometer- puts it under his arm- so very cute!

Birth Story

2006-02-19T10:32:00.005-06:00

Here goes....Friday Feb. 17th- works sucks- I begged baby to come so I didn't have to work on Monday.
Saturday Feb. 18th- In the afternoon we were bored and decided to go to the mall. We walked around for hours. Got home and had supper. I fell asleep on the couch and woke up at 10pm to go to the bathroom. Barely got to the bathroom and my water broke. Ran and woke RJ up and told him get your bag packed! Stood up just in time and gushed all over the floor! I was only having mild contractions. Called the hospital and they told me to come in. Got to the hospital about 12:45 am- took my time getting there. I was dilated to 4 cm. They wanted to start pitocin, but I refused. At 4 am I started feeling nauseated and got my IV started. Woke RJ up to tell him I was getting my IV and he said "no thank you". He is such a dork! I was dilated to 6 cm. By 7:30 am I told RJ he better wake up because I am going to have a baby soon- he told me "just 30 minutes more". So, at 8am I was 10 cm and I woke RJ up again. I still had a little cervix to efface, so had to wait until 9am to push. 9am started to push. At 10:30am baby's head was delivered with a very tight cord around neck. Clamped the cord and I pushed with all I had and out came a baby boy at 10:32am. He was pale and not breathing right away. His apgar was 6 at 1 minute and 9 at 5 minutes. He weighed 7lbs. 10oz and was 20 inches long. We named him Ryan Richard. I had a natural delivery and was proud that I did it! Ryan had a large bruise on his head, but it went away by the next day. I can't imagine a day without him!