Guitar Lessons

Tomorrow will mark Jeremy's second guitar lesson, but I didn't want his first one to go by without blogging about it. He was so excited! Bryan went into a local music shop and spoke to them about Jeremy wanting to take lessons. Bryan ended up signing him up for 1 month and came home with a guitar, picks and case. All of the kids wanted to play it. The guy told Bryan Jeremy is a little young, but to try it out and see.

So, off they went last week. I met Bryan and the boys and took Logan and Courtney so Bryan and Jeremy could go to their first lesson. I was glad because I was nervous for some reason. We all met up for dinner at one of our favorite restaurants and I got the scoop. His teacher told Bryan that he is very bright and seems to catch on very quickly and was really surprised due to his age (6). They had their lesson and his teacher assigned him an actual song. He told us to just "see" what happens. Don't force anything, just see if he wants to practice, if he likes it, and if he "catches" on. The teacher told us that he told Jeremy he was smart, his reply was, "I know and funny, too." Needless to say we had a mini lesson on what to do when someone gives you a compliment, you simply say thank you. However, we did think it was funny!

That night he came home and taught me everything he learned. I can honestly say I am not cut out for the guitar. I can't even get my fingers to work on a youth guitar!! Jeremy wants to sing while he plays, but hasn't mastered that just yet. He can, however, play Hot Cross Buns! It is just too stinkin' cute! He absolutely loves it and I am anxious to see what happens tomorrow!

Blood Work Results

After a horrible reaction to the super strong doses of antibiotics, Bryan and I decided to take Courtney off of them and call the doctor Monday. She was so sick. We just couldn't fathom giving her more when all of the blood work had been done and she may not even need the antibiotics. The infectious disease doctor is only in the office on Tuesdays, the rest of the time she works out of a hospital. Anyways, I called Monday and she happened to have a cancellation for today. Relief!

The blood work was in and things look good. Her immune system is good and intact. Her titers, however, showed lower than she would like. She said that they weren't "stellar". Basically, her body has a difficult time making antibodies to fight off some strains of the strep bacteria. So, the Pneumovax that she just had last week and the new Prevnar 13 she will need to take in a few weeks will help build those numbers. She will re-check her blood levels one month after she has the Prevnar vaccination. The culture of the drainage this time came out to be viral, not an infection. (This means we do not have to continue the two antibiotics that caused her to be so sick! Yahoo!) She feels that the drainage is part of Courtney's vicious cycle. Her eustachian tube doesn't function correctly which is why she has tubes so her ear will drain. In a non-implanted person this would not be an issue. Since there is a foreign object in her ear any drainage poses a threat. The hope is as she continues to grow her eustachian tube will develop and work correctly and will "grow out" of ear infections.

Of course, Courtney had drainage today and since she has had so many infections she is putting her in a prophylaxis for 6 months. In the meantime if we have any questions or continue to have ear infections to go back and see her. She is great!! I am keeping my fingers crossed that we can boost her immune system and that in 6 months we can stop all medications and be healthy!!! All her allergy testing came back negative except for cats!! Yep, she is allergic to cats! Thank goodness we don't have any pets, unless you count a fish!?

Plan of Action

After my last discouraging doctor's appointment, etc. I decided our best approach was to take action and make an appointment with an infectious disease doctor. In fact, the doctor we ended up seeing was a pediatric infectious disease doctor! Even better!

Two weeks ago this Thursday Courtney finished a 10 day round of augmentin and one week's worth of antibiotic drops. I was starting to either worry or hope, I am not sure which one, that her ear was going to be all cleared up and we weren't going to have any more problems. This would be good if it were really the end, but bad since we had the appointment scheduled with the doctor for today. Did the antibiotics really work? If it wasn't draining yet, would the doctor still take it seriously and move forward with an action plan? I just wanted a concrete plan.

I think with a little divine intervention, Courtney woke up this morning with drainage. I know this seems terrible that I wanted her to have drainage. It is kind of like that squeak in your car that you want fixed, but whenever you take your car in it doesn't do it! You want it to squeak, I wanted it to drain! And it did! So here is the plan!

We had blood work done today which wasn't easy, but she did it. Thankfully we did at Methodist Children's so they had tiny needles, yet it still took a stick in each arm to get enough blood for today. She has to go back again to do the rest because they are only allowed to take a certain amount of blood in one day. The bottom line is the doctor wants to check her immune system more thoroughly, boost it and find out why she can't clear up the infection completely.

To start off we are on two types of antibiotics for 14 days versus the normal 10. She is on a stronger dose of augmentin and rifampin. She did warn me, thank goodness, that rifampin will cause her tears, urine, snot, etc. to be orange so don't freak out! She is leaving drops to Dr. Not so Happy to prescribe tomorrow at our follow up from the ear infection that is already back! We will go back to her in two weeks to get all of our results and determine our next steps based on the results, etc.

In the meantime she ordered a regular ol' CBC which will basically measure the concentration of red blood cells, white blood cells and platelets in the blood. She also ordered autoimmune deficiency testing for subclasses Ig C, Ig E, Ig M, Ig I, Ig G, and Ig A. In addition to that she did the pneumococcal titers (14 serotypes). This will determine if Courtney fails to make an antibody response to any of the 14 serotypes. One of the tests we have to still do is the allergy RAST test which will determine if the drainage is allergy related and the infection is really a secondary infection. Apparently this test alone takes up the one day allotment that can be taken from Sassy Pants. After the blood draw, she got a dose of the pneumovax! The thought behind this was to boost her immune system and cover more types of pneumococcus. And last, but not least she ordered a streptococcus pneumoniae urine test. From my understanding this will test if streptococcus pneumoniae is in her urine, but I don't know at this point, why that is important! This by the way, has to be done on a non potty trained little girl and taken to San Antonio on ice within 4 hours after she goes. Okay Heavenly Father, a little more divine intervention might be needed here!! Timing this between the commute to school, work, doctors appointments and a non cooperative 2 year old should be interesting!!!

The only other thing she would like to do is to have her vaccinated with the newly FDA approved Prevnar 13. This was just approved February 24, 2010 and will cover 13 strains of bacteria versus the 7. Because Courtney had the other vaccine today she wants to wait for one month.

Okay, that was more medical talk than I know what to do with!! I feel really good about this plan and really good about this doctor! She wants a handle on this, wants to know why she continues to have these ear infections AND she has a plan!! I will keep you all posted!

Reaching Out

I haven't been the best blogger, and I don't know who all reads this, but I need help. This is our situation.

Courtney has chronic ear infections with drainage. We do countless rounds of oral antibiotics, and I think we have gone through at least a half dozen bottles of antibiotic drops. It will clear up and then within a few weeks to a month, at the most, it will begin draining again. It is always the right ear, we are on our second set of PE tubes and have done an adenoidectomy. We have ruled out a biofilm and an infected implant due to two cultures a year apart, but both came back with the pneumococcal bacteria.

This past week we went back to Dr.Not so Happy with Him Right Now and found out the recent culture showed pneumococcal bacteria. He prescribed oral antibiotics and drops and sent us back to our pediatrician - what? You are the ear doctor!! He said that he was not okay with the situation, but since the implant wasn't infected we needed to go to the pedi to explore blood work for an immune deficiency and possible discuss seeing an infectious disease doctor. So, I am at an ear "expert" and you are sending me to my pedi with a chronic ear infection!?

I was able to get in yesterday with our pedi, he was great, but obviously isn't familiar with everything with cochlear implants, etc. We did the blood work which came back normal and he said there isn't anything more he can do. What? What the heck am I supposed to do now!? I called our pedi ENT office for a 2nd opinion or something, but can't get in until April 26th!

Has anyone experienced chronic ear infections like this? There normally isn't fever, but always drainage with or without odor and turns tan or yellow or greenish. Should we try to get into an infectious disease doctor? Is it okay to just keep doing oral antibiotics and drops?

Any advice would be great!

Quick Update

We ended up doing a culture on Courtney's right ear. We find out tomorrow what it is and how we will treat it. The options are more oral antibiotics, going to an infectious disease doctor, removing the tube they just put in, patching her eardrum and doing more antibiotics, or iv antibiotics. So, we shall see!

On another note Jeremy has decided not to play baseball. He was all signed up, but hadn't started yet. Bryan and the boys went down to the mission by our house (big lawn area) to play ball. Logan can't get enough baseball and would sleep in his baseball pants if he could! They were playing and then somehow Bryan and Jeremy started talking. Bryan asked him if he really wanted to play. Apparently Jeremy hesitated and then told Bryan that he really didn't want to. Bryan told him it was okay and that he just needed to tell him, etc. So, Bryan came home feeling bad, not so much because Jeremy didn't want to play (he was a little bummed about it) but because Jeremy thought Bryan would be disappointed!

Oh, my heart went out to both of them. Late last night the little ones went to bed so Jeremy and I had ice cream cones and Bryan sat at the table with us. Jeremy is really into music and loves to sing, etc. He asked if he could take guitar lessons. Bryan told him at the table he could and we discussed practicing and the responsibility, etc. He was and is truly excited about taking lessons, he lit up. Never did so much about baseball.

As for Logan - he is great! It is never a dull moment with him! Our house has been on the market so the other day we had a showing. Jeremy wasn't too happy about it as he doesn't want to move. I went on to explain that the Lord is in charge and we will move in His time, etc. So the next morning after breakfast Logan asks me, "Mommy, when is Jesus going to sell our house." It still makes me chuckle!!

And last, but certainly not least, Bryan has started taking, drum roll please...................................... bagpipe lessons!!! Yep, my hotty, fireman hubby is going to be wearing a skirt, I mean kilt!!! It is for the fire department and he is getting better every day, but this too, makes me chuckle!! Love ya babe!

Thief!

Yep, I am a thief! I stole this video from this blog that I follow. It was such a good, quick explanation of how the cochlear implant works, I thought I had to have it! Thank you Lone Star Family!!

Late Catch Up

A week has already passed since my baby boy turned 4! Logan James is now, "A different person," according to him! We had a joint birthday party with a friend from Jeremy's class at Sunshine Cottage (pictures to come). All he wanted was cake and balloons, but he also got a rented jump castle, friends, pizza and presents! He was so cute. Logan is our funny guy, all middle child! He has a twinkle in his eyes and such a love bug! When he is really buttering you up, he, "Gets some sugar!" Oh, we just love him so much!

This past Saturday he had a T-ball clinic. He was so excited. Bryan took him the day before to Academy for baseball pants and socks. He woke up a little after 6am Saturday asking if he could put on his new baseball pants and if it was time to go to his game yet! He also got a new bat a few weeks prior, but it was on timeout since Logan hit Courtney in the face with it and gave her a black eye! Anywho, he loves baseball and can't wait for Saturday to come again to go to his "game".

On another note, Courtney is in a big girl bed! Her crib turns into a toddler bed and since Logan and Courtney are so close in age, we never used it that way before!! I am a believer of keeping kids in cribs as long as you can. Well, the time came! I heard a blood curdling scream and found her face down on the ground. Yep, she tried to climb out. I knew it was coming, but the boys would just monkey their way down, not Courtney! So far it hasn't been too bad. However, it is difficult trying to tell a deaf girl to get back in bed. It's kind of interesting!! I am seeing that she can read lips. I told her after laying with her for a while, "Okay, Courtney it is time to go night night." She said, "Okay, night night." People told me she would do this and in the middle of the night if she woke up sick or whatever that we would be able to carry on a "normal" conversation, but it was hard to believe. It's actually kind of amazing!!

The flip side of Courtney is that she is battling an ear infection even after removing those adenoids and 2nd set of tubes. So, we are on a high dose of antibiotic ear drops and a wick in her ear to keep the drops in. We go back on Thursday to take the wick out. Then we wait 72 hours. If there is any drainage at all we have to do a culture. Depending on what the culture comes back with, if we have to do it, we will either do IV antibiotics or re-do the tube. This isn't the first time we have done a wick and a culture so we shall see!! I'm just really hoping for no drainage after Thursday!!

Jeremy is doing great in school and just went to a baseball clinic on Saturday as well. He loved it and did great! He also gave his first talk in church on Sunday. Oh y goodness it warmed my heart! He did so good! He was so nervous, but didn't need any help. We practiced reading it and then he skyped with his grandparents in CA and practiced for them the night before On Sunday he was so scared he just couldn't look up at anyone! He has such a sweet spirit! It worked out for Bryan to be there as well to see his first talk, yahoo!

Well, that is about it for now! I am really trying to post more regularly, but it is hard!! More pictures to come soon!