So HI ALL!!!!!! It has been awhile since I have been on here so basically Emmie is getting bigger and stronger and thriving! Love to hear that! She is up to the 95th percentile in weight~!!!!!!! However she is still at the 15th percentile for height. Lol aparently she doesn't have the best genes for height. And now comes the excuse the language bitchy part of this post. I am sick of the FDA mandating what medications our children can and can not take. Emmie used to be on Ultrase MT~12's and we were loving it we never had any problems with her belly, NEVER. When the FDA decided to stick their noses in this stuff and say they are only approving certain enzymes Emmie's belly got all screwed up. We have attempted multiple doses of Creon, and now are attempting multiple doses of Zenpep and still have belly issues. I am sick of it. I WANT ULTRASE BACK. This is ridiculous. Why is CF care so much different from state to state? Why do our children have to suffer because the FDA doesn't want to deal with it? I am soooooooo frustrated. I think I am done venting for the moment but I am sure I will be back soon because I need to start getting this off my chest. It is building and building and I gotta get it out!
Love ya!
Melissa, Jason and Emmie too!
Thursday, December 16, 2010
Saturday, September 25, 2010
Hockey is back!
So, I know it has been awhile and I apologize. Em has been doing ok since my last blog. The only main issue has been her allergies going haywire! And by haywire I don't just mean a little bit I mean completely NUTS. We have since been to the allergist a few times and he has now upped her allergy meds to include allegra, zyrtec, nasonex, sudafed, and flovent. All of this for such a little girl. But I do think it is finally starting to work. Thank goodness. Emmie really was losing a lot of sleep with the congestion all being stuck in her sinuses. We have an upcoming PFT on October 6th to determine whether the flovent is controlling the air trapping. Hopefully it is and continues to do so.
On another note hockey is for sure back in full swing. Miss Princess made her debut with the "new" Delta College Hockey team, (and by new I mean at least 15 incoming freshman)! The DC Hockey boys have always been amazing upstanding boys (men) who work very hard to fundraise to help to cure CF. I think this team will be just as good if not better than previous teams. Hockey players really do have hearts of gold, all of them. These new boys took the time to meet Emmie tonight, all attempting to learn about this disease. They welcomed her as their new "cheerleader" and even took her out on the ice for the national anthem. Needless to say Emmie had a great night. She was quite upset when she had to leave to go home and get treatments. The GREAT NEWS being that the DC Hockey boys pulled their first win of the season tonight!!!!!!! Great job boys! Keep it up! Emmie is cheering you on thats for sure!
For tonight that is all, tired yet still excited about our win!
Love,
Melissa and Emmie!
On another note hockey is for sure back in full swing. Miss Princess made her debut with the "new" Delta College Hockey team, (and by new I mean at least 15 incoming freshman)! The DC Hockey boys have always been amazing upstanding boys (men) who work very hard to fundraise to help to cure CF. I think this team will be just as good if not better than previous teams. Hockey players really do have hearts of gold, all of them. These new boys took the time to meet Emmie tonight, all attempting to learn about this disease. They welcomed her as their new "cheerleader" and even took her out on the ice for the national anthem. Needless to say Emmie had a great night. She was quite upset when she had to leave to go home and get treatments. The GREAT NEWS being that the DC Hockey boys pulled their first win of the season tonight!!!!!!! Great job boys! Keep it up! Emmie is cheering you on thats for sure!
For tonight that is all, tired yet still excited about our win!
Love,
Melissa and Emmie!
Tuesday, August 3, 2010
Lots of new stuff
Hi all! Sorry this has been a long time coming, been a bit busy. There has been SO much going on here in the Ruple household, kinda crazy actually. So Emmies surgery went well. Labial adhesions taken care of. We had clinic this past week and am (somewhat) happy to report that Miss emilie has been put on a diet! That is actually one amazing feat for a CF baby!
Em previously would not eat any solids without severe bribing. When we went to clinic last week she was up almost 4 pounds! Seriously? So they gave us 2 options. 1.) start diluting her pediasure half water and half pediasure or 2.) cold turkey her pediasure altogether.
I came up with my own idea I guess, we have cut out all pediasure except for our nighttime one. Seems to be working ok as of now we are only 4 days in so we will see. Also, decided to change her albuterol to xopenex, (she has been getting really twitchy at night)and we have attempted it and so far not really impressed. She did MUCH worse on the xopenex vs albuterol. So now we are going to just get through the xopenex we have open in the morning albuterol at night and from then on continue with straight albuterol.
They have also changed her nasal spray b/c she was complaining of burning, have not picked that one up yet.
Also, on a mad hunt for source cf vitamins. Can't seem to find a pharmacy in this area that can stock it. I have not used the CF pharmacy ever yet and not sure how it works so any input on that would be great.
On another note we are feeling very blessed to have such a healthy little CF warrior on our hands. I am extremely nervous about our nutritional health as she does not want to eat what she should be. I am excited about the fact that her dietician went through a list of what EXACTLY she was eating before we went to clinic and told us she had only been getting about 1000-1100 calories a day. Really? for a CF kid that is incredible. They actually want us to cut that down a bit. I think we will be ok.
Emmie is now doing her vest again. She took a break for a while. Not a mom approved break may I add. She would just scream, and her nose would get nasty. So a break it was. We are now back at it full force. Pulmonologist said we only need to make certain we are doing 20 mins a day. We are doing it wether she likes it or not now. I am not going to let this disease get me down. Earlier in the day today I made a phone call b/c I was just a bit overwhelmed. Got calmed down. Thanks Grandma. Medications can be insane sometimes. Finding a pharmacy that carries them insurance to cover them. A pharmacy tech that is cooperative. Makes you want to pull your hair out sometimes! It is now under control.
Another great thing we are working on is getting a float for the Rock CF Foundation in the Bay City St Patricks Day Parade. This event is huge around here drawing in crowds of 8-10,000 people anually. Imagine all the attention CF can get especially if we have an awesome float that I know can be designed between myself and Miss Emily Schaller! Soooo excited about it! Can not wait.
We are looking at doing a pancake breakfast also. Lots on our plate right now, speaking of which apparently Jason has dinner done. Probably should go eat!
Love,
Jason, Melissa, and Emmie too!
Em previously would not eat any solids without severe bribing. When we went to clinic last week she was up almost 4 pounds! Seriously? So they gave us 2 options. 1.) start diluting her pediasure half water and half pediasure or 2.) cold turkey her pediasure altogether.
I came up with my own idea I guess, we have cut out all pediasure except for our nighttime one. Seems to be working ok as of now we are only 4 days in so we will see. Also, decided to change her albuterol to xopenex, (she has been getting really twitchy at night)and we have attempted it and so far not really impressed. She did MUCH worse on the xopenex vs albuterol. So now we are going to just get through the xopenex we have open in the morning albuterol at night and from then on continue with straight albuterol.
They have also changed her nasal spray b/c she was complaining of burning, have not picked that one up yet.
Also, on a mad hunt for source cf vitamins. Can't seem to find a pharmacy in this area that can stock it. I have not used the CF pharmacy ever yet and not sure how it works so any input on that would be great.
On another note we are feeling very blessed to have such a healthy little CF warrior on our hands. I am extremely nervous about our nutritional health as she does not want to eat what she should be. I am excited about the fact that her dietician went through a list of what EXACTLY she was eating before we went to clinic and told us she had only been getting about 1000-1100 calories a day. Really? for a CF kid that is incredible. They actually want us to cut that down a bit. I think we will be ok.
Emmie is now doing her vest again. She took a break for a while. Not a mom approved break may I add. She would just scream, and her nose would get nasty. So a break it was. We are now back at it full force. Pulmonologist said we only need to make certain we are doing 20 mins a day. We are doing it wether she likes it or not now. I am not going to let this disease get me down. Earlier in the day today I made a phone call b/c I was just a bit overwhelmed. Got calmed down. Thanks Grandma. Medications can be insane sometimes. Finding a pharmacy that carries them insurance to cover them. A pharmacy tech that is cooperative. Makes you want to pull your hair out sometimes! It is now under control.
Another great thing we are working on is getting a float for the Rock CF Foundation in the Bay City St Patricks Day Parade. This event is huge around here drawing in crowds of 8-10,000 people anually. Imagine all the attention CF can get especially if we have an awesome float that I know can be designed between myself and Miss Emily Schaller! Soooo excited about it! Can not wait.
We are looking at doing a pancake breakfast also. Lots on our plate right now, speaking of which apparently Jason has dinner done. Probably should go eat!
Love,
Jason, Melissa, and Emmie too!
Tuesday, June 29, 2010
Surgery fiasco
Emmie had her appointment with the pediatric surgeon today. The good news is that he thought he may have been able to fix the girl problem in the office, however he did not want to traumatize her. I like that program! I don't like the fact that we now have to have surgery to fix it. The surgeon does not want to wait until we have adenoid surgery to fix the girl problem so surgery is scheduled for Monday. Yup 6 (almost 5) days from now. Although I do find relief in the fact that it is a 2 second surgery. So on to the fiasco part.
Emmie is also due for her pulmonary function test (PFT) in August. We can not do the adenoid surgery just prior to having this test for risks of opening things back up after they have not fully healed. So, I believe what will be happening is that we will go for our currently scheduled clinic visit on the 6th of August get clearance for surgery, attempt to get our PFT done as soon after that as possible and still maintain our surgery clearance, then re-schedule our adenoid surgery as soon as possible after that. If it does not work out that well and we for some reason lose our clearance for surgery or it has taken too long for all of this to happen we will have to wait for November to get clearance again and then do the adenoid surgery.
I am actually on the fence about this particular surgery for the simple fact that we just purchased a Holmes Air Purifier b/c of the recommendation of Emmies allergist. Since running that in the bedroom Emmie has not been snoring or having a "stucky" nose. I find that very reassuring. I will have her pulmonologist evaluate her in August for her opinion but as of now am feeling much better about the situation.
I think that is all for now. Prayers for a successful surgery, and speedy recovery.
Love,
Melissa, Emmie, and Jason too!
Emmie is also due for her pulmonary function test (PFT) in August. We can not do the adenoid surgery just prior to having this test for risks of opening things back up after they have not fully healed. So, I believe what will be happening is that we will go for our currently scheduled clinic visit on the 6th of August get clearance for surgery, attempt to get our PFT done as soon after that as possible and still maintain our surgery clearance, then re-schedule our adenoid surgery as soon as possible after that. If it does not work out that well and we for some reason lose our clearance for surgery or it has taken too long for all of this to happen we will have to wait for November to get clearance again and then do the adenoid surgery.
I am actually on the fence about this particular surgery for the simple fact that we just purchased a Holmes Air Purifier b/c of the recommendation of Emmies allergist. Since running that in the bedroom Emmie has not been snoring or having a "stucky" nose. I find that very reassuring. I will have her pulmonologist evaluate her in August for her opinion but as of now am feeling much better about the situation.
I think that is all for now. Prayers for a successful surgery, and speedy recovery.
Love,
Melissa, Emmie, and Jason too!
Monday, June 28, 2010
Wow, that's all I can say.
Ok so I know it's been a few days, ok maybe a week but it has been busy busy busy. So we had a good Fathers Day, however I felt as though my teeth were hurting. No big deal just figured I had another sinus infection going on. So then Monday we went to Emmies ENT appointment. He told us he feels as though Em needs her adenoids removed as they are causing her breathing issues i.e. snoring at night time. She is also suffering from recurrent sinus infections and those could be the culprit. Their solution remove them. Not so comfortable with this idea but he will also check her tubes while he is in there. Her left tube has been blocked since a month after he put it in. Emmie was then 17 months old. She is now 31 almost 32 months. I suppose it's time to see why it is still blocked.
Then on Tuesday my pain in my teeth and cheek came back, quite severly may I add. So I went to the local walk in clinic to be told I have an ear infection. Seriously? Are you kidding? My ear doesn't hurt. Yet I go get the meds he perscribed. Later that evening I am still in quite a bit of pain that tylenol 3 and motrin are not touching. Jason sends me in to the ER. They look at me and say you have a sinus infection. Really, they couldn't have told me that earlier? So they change my pain meds and send me on my merry little way. They did say if it swells up or the pain gets worse come back. Ok, fine.
So again the good patient I am I go and fill the different meds for my so called sinus infection. When I wake up on Wednesday my face is puffy. Ok I think, not so bad it will get better it is from laying down all night. Right, I really should get out of this dream world and back to reality. So I let it go. Eventually that same day it has swollen so bad that it is now pushing my eye closed and even the new pain meds are not touching it. Jason again (at 1:30am) sends me into the ER. So I drive 1 eyed all the way there.
They order a CT scan of my head with contrast of course it costs more. Of course with contrast means that they have to start an IV right? yeah it does. So they try. Attempt 1, fail, Attempt 2, fail, Attempt 3, good, until we start to push contrast through it. Attempt 4, fail. Attempt 5, WHOO HOO THEY GOT IT!!!!!!! But first of all I am wondering why did they have to order a CT scan for this what is wrong with a $50.00 x-ray, nope have to spend thousands and get a CT. B E A utiful.
The ER Dr then comes back with a completely different diagnosis as the previous night. Same Dr of course. I now have an abscess tooth, and must see my dentist immediately. Even better. Finally go home at 6:30am. Call the dentist they don't want to see me they say just go straight to the endodontist. Okey dokey. So I do, again I am being a good patient. He looks at me and my swollen chipmunk, 1 eyed face and says let it drain I will look at it again clean it and medicate it on Monday. Again, Really? I am supposed to leave for vacation tomorrow? Seriously people come on?
He says go on vacation it will be fine. So I think ok and if it is not then what. Another ear infection diagnosis? Whatever. So we went. Everything was fine. Had a great time in Mackinaw City, and Boyne City despite the rain and chilly temps. Even with the chipmunks in my cheek. Came home had a blast at a family graduation party, and crashed.
Sunday was kind of an uneventful day. It was quite rainy here in the lovely land of Michigan that we call home. So basically we did nothing.
Then as we are getting Em ready for bed she tells us it hurts to go potty. And my mind starts replaying the episode we had in mid-May of e-coli, thrush, and UTI all together. So this mornings first call was to the pediatrician. Bring her in we will do a urine specimin. Ok great gotcha. Done. No UTI but we did find "sever labial adhesions" basically not good news. Tomorrow we will go see the pediatric surgeon to figure out how and when to fix the problem. Hopefully this can be taken care of at the same time as the adenoids. We will see. Then we stop at McD's to get me something to eat before returning to the lovely endodontist. Jason asks me to dump Em's cranberry juice out. Ok roll down the window, or so I thought, and dump. Except it didn't happen that way it dumped on me. Off to the endodontist I go full of pink spots from wonderful cranberry juice that decided not to go out the window.
Then the endodontist surprises me with well lets not just clean it and medicate it we will just do the whole darn root canal. OH JOY!!!!!!!!! You have no idea. At least that part is over. Off to Saginaw we now go. Next up, nail in tire to give us an almost flat. And then to top it all off Jason gives Em a bath, she runs away from him and decides to pretend the kitchen floor is a slip and slide. Wow didn't work so well for her. She now has a large lump on her head.
So there is the AMAZING update from the last week I know you all have been craving. Exciting huh?
Love,
Melissa, Em, and Jason too
Then on Tuesday my pain in my teeth and cheek came back, quite severly may I add. So I went to the local walk in clinic to be told I have an ear infection. Seriously? Are you kidding? My ear doesn't hurt. Yet I go get the meds he perscribed. Later that evening I am still in quite a bit of pain that tylenol 3 and motrin are not touching. Jason sends me in to the ER. They look at me and say you have a sinus infection. Really, they couldn't have told me that earlier? So they change my pain meds and send me on my merry little way. They did say if it swells up or the pain gets worse come back. Ok, fine.
So again the good patient I am I go and fill the different meds for my so called sinus infection. When I wake up on Wednesday my face is puffy. Ok I think, not so bad it will get better it is from laying down all night. Right, I really should get out of this dream world and back to reality. So I let it go. Eventually that same day it has swollen so bad that it is now pushing my eye closed and even the new pain meds are not touching it. Jason again (at 1:30am) sends me into the ER. So I drive 1 eyed all the way there.
They order a CT scan of my head with contrast of course it costs more. Of course with contrast means that they have to start an IV right? yeah it does. So they try. Attempt 1, fail, Attempt 2, fail, Attempt 3, good, until we start to push contrast through it. Attempt 4, fail. Attempt 5, WHOO HOO THEY GOT IT!!!!!!! But first of all I am wondering why did they have to order a CT scan for this what is wrong with a $50.00 x-ray, nope have to spend thousands and get a CT. B E A utiful.
The ER Dr then comes back with a completely different diagnosis as the previous night. Same Dr of course. I now have an abscess tooth, and must see my dentist immediately. Even better. Finally go home at 6:30am. Call the dentist they don't want to see me they say just go straight to the endodontist. Okey dokey. So I do, again I am being a good patient. He looks at me and my swollen chipmunk, 1 eyed face and says let it drain I will look at it again clean it and medicate it on Monday. Again, Really? I am supposed to leave for vacation tomorrow? Seriously people come on?
He says go on vacation it will be fine. So I think ok and if it is not then what. Another ear infection diagnosis? Whatever. So we went. Everything was fine. Had a great time in Mackinaw City, and Boyne City despite the rain and chilly temps. Even with the chipmunks in my cheek. Came home had a blast at a family graduation party, and crashed.
Sunday was kind of an uneventful day. It was quite rainy here in the lovely land of Michigan that we call home. So basically we did nothing.
Then as we are getting Em ready for bed she tells us it hurts to go potty. And my mind starts replaying the episode we had in mid-May of e-coli, thrush, and UTI all together. So this mornings first call was to the pediatrician. Bring her in we will do a urine specimin. Ok great gotcha. Done. No UTI but we did find "sever labial adhesions" basically not good news. Tomorrow we will go see the pediatric surgeon to figure out how and when to fix the problem. Hopefully this can be taken care of at the same time as the adenoids. We will see. Then we stop at McD's to get me something to eat before returning to the lovely endodontist. Jason asks me to dump Em's cranberry juice out. Ok roll down the window, or so I thought, and dump. Except it didn't happen that way it dumped on me. Off to the endodontist I go full of pink spots from wonderful cranberry juice that decided not to go out the window.
Then the endodontist surprises me with well lets not just clean it and medicate it we will just do the whole darn root canal. OH JOY!!!!!!!!! You have no idea. At least that part is over. Off to Saginaw we now go. Next up, nail in tire to give us an almost flat. And then to top it all off Jason gives Em a bath, she runs away from him and decides to pretend the kitchen floor is a slip and slide. Wow didn't work so well for her. She now has a large lump on her head.
So there is the AMAZING update from the last week I know you all have been craving. Exciting huh?
Love,
Melissa, Em, and Jason too
Monday, June 21, 2010
Another day, another appointment!
So we had another appointment today attempting to figure out this whole stucky nose thing. We ventured out to the ENT. Her doctor has come to the conclusion that Miss Emmie needs surgery to remove her adenoids. Whoo-hoo right. Not so much. I know that a lot of CF kids go through surgeries frequently, however not Em. She has had 1 surgery to put tubes in her ears. I didn't do well that day either. I just have a hard time with it I guess. So on July 23rd we will trek off to the hospital to have this done whether Mom likes it or not.
On a positive note her ENT looked into MY nose today too. Maybe not all that plesant but I got an answer as to why my right side of my face has been hurting soooooo bad. Actually yesterday I almost broke down and just started crying it hurts so bad. At first I thought I had an abscess tooth so I went to the dentist, not the case, teeth are all fine. So even though I have been on antibiotics for a month I figured it was a sinus infection and continued with the antibiotics. Again, not the case. He said it is a sinus issue, it basically is a irritated nerve in my sinus caused from the likes of Bath and Body Works or Yankee Candle or clorox bleach or something of the like. All I can do is sinus rinses, and hot compresses on it with sudafed, and motrin until it goes away. After all this I start thinking an irritated nerve, well I am irritated but the nerves really shouldn't be so they need to stop irritating me. The pain is miserable. It almost feels as though my sinuses are pushing so hard on my teeth that they are all going to fall out. I literally can not put my teeth together to chew or it feels like my teeth are exploding into my eyes.
Ok enough complaining. More updates to come as they happen!
Love,
Melissa and Em
On a positive note her ENT looked into MY nose today too. Maybe not all that plesant but I got an answer as to why my right side of my face has been hurting soooooo bad. Actually yesterday I almost broke down and just started crying it hurts so bad. At first I thought I had an abscess tooth so I went to the dentist, not the case, teeth are all fine. So even though I have been on antibiotics for a month I figured it was a sinus infection and continued with the antibiotics. Again, not the case. He said it is a sinus issue, it basically is a irritated nerve in my sinus caused from the likes of Bath and Body Works or Yankee Candle or clorox bleach or something of the like. All I can do is sinus rinses, and hot compresses on it with sudafed, and motrin until it goes away. After all this I start thinking an irritated nerve, well I am irritated but the nerves really shouldn't be so they need to stop irritating me. The pain is miserable. It almost feels as though my sinuses are pushing so hard on my teeth that they are all going to fall out. I literally can not put my teeth together to chew or it feels like my teeth are exploding into my eyes.
Ok enough complaining. More updates to come as they happen!
Love,
Melissa and Em
Sunday, June 20, 2010
Good Morning, and Happy Fathers Day to all the wonderful daddys out there!
We are still fighting this "stucky" nose, we are going to the ENT tomorrow so hopefully he can figure somethin g out to help munchkin feel better.
On a GI note we are doing additional prevacid to attempt to combat belly troubles. We will see!
Since today is Fathers Day I would like to say that I am truly blessed for all the father figures I have in our life. Not my own however. See I didn't know mine because he didn't and still doesn't care enough to be in my life. I gave him the chance when I was 23, he decided to be there for about 2-3 years and even walked me down the isle when I got married (what a mistake that was). I now have not heard from him in about a year. His loss not mine.
I can say however that I have one of the best grandpas there is. He is a veteran. He made it through college a very long time ago by lip reading only. He can not hear. Back then he could not afford hearing aids, so he sat front row in all of his classes to lip read what he was being taught. How amazing is that? I am blessed to have him and do not think he understands how much we all love him.
Emmie also has 2 of the best papas there is. You should see her eyes light up when either of them is around. Her paternal papa comes around and cuts her grass because she has a blast helping him. He tickles her, plays with her, lets her "drive", all the things that she truly enjoys. Her maternal papa is amazing too. He is a farmer, (we live in hickville, USA) anytime Em sees a tractor out in a field she lights up thinking it is her papa. It's kind of funny actually. It is the little things in life that make it worth it. Anytime either of her 2 papas decide it is time to leave she will breakdown and cry so hard it almost makes me want to cry! (But on a side note she loves her grammy and her grandma just as much she crys when they leave too).
And lets not forget Emmies daddy. He works very hard to support this family so that I can stay home to take care of her and do meds. We appreciate him more than he knows. Lots of late nights have been spent at an ice rink with J reffing hockey. Not that he doesn't love it, that is not the point. Emmie goes through spurts where all she wants is her daddy, and it is adorable. She misses him when he is gone to working as she puts it. I am glad that she is getting the chance to have her daddy around, and a daddy that loves her. Because with my history with my dad it would have been nice but I don't care anymore. Emmie gets that chance and I couldn't be happier!
Today we will go to my moms house and play and have fun and enjoy the papas and grandpas for the day!
On another note yesterday Emmie woke up and told me that she wanted a dog at Emmies house. That simply is not a good idea with allergies and all. So, we decided to "borrow" a dog for the day. We went and got my moms cocker spaniel. Oh my goodness did she have a blast playing and walking him. It makes me sad to know that she can not have that kind of fun everyday. Poor Riley on the other hand was quite tired since he is used to sleeping all day and Emmie would have nothing to do with that!
Now that I have vented and ranted I think I am done for the day. More updates to come soon.
Have fun.
Melissa and Em
We are still fighting this "stucky" nose, we are going to the ENT tomorrow so hopefully he can figure somethin g out to help munchkin feel better.
On a GI note we are doing additional prevacid to attempt to combat belly troubles. We will see!
Since today is Fathers Day I would like to say that I am truly blessed for all the father figures I have in our life. Not my own however. See I didn't know mine because he didn't and still doesn't care enough to be in my life. I gave him the chance when I was 23, he decided to be there for about 2-3 years and even walked me down the isle when I got married (what a mistake that was). I now have not heard from him in about a year. His loss not mine.
I can say however that I have one of the best grandpas there is. He is a veteran. He made it through college a very long time ago by lip reading only. He can not hear. Back then he could not afford hearing aids, so he sat front row in all of his classes to lip read what he was being taught. How amazing is that? I am blessed to have him and do not think he understands how much we all love him.
Emmie also has 2 of the best papas there is. You should see her eyes light up when either of them is around. Her paternal papa comes around and cuts her grass because she has a blast helping him. He tickles her, plays with her, lets her "drive", all the things that she truly enjoys. Her maternal papa is amazing too. He is a farmer, (we live in hickville, USA) anytime Em sees a tractor out in a field she lights up thinking it is her papa. It's kind of funny actually. It is the little things in life that make it worth it. Anytime either of her 2 papas decide it is time to leave she will breakdown and cry so hard it almost makes me want to cry! (But on a side note she loves her grammy and her grandma just as much she crys when they leave too).
And lets not forget Emmies daddy. He works very hard to support this family so that I can stay home to take care of her and do meds. We appreciate him more than he knows. Lots of late nights have been spent at an ice rink with J reffing hockey. Not that he doesn't love it, that is not the point. Emmie goes through spurts where all she wants is her daddy, and it is adorable. She misses him when he is gone to working as she puts it. I am glad that she is getting the chance to have her daddy around, and a daddy that loves her. Because with my history with my dad it would have been nice but I don't care anymore. Emmie gets that chance and I couldn't be happier!
Today we will go to my moms house and play and have fun and enjoy the papas and grandpas for the day!
On another note yesterday Emmie woke up and told me that she wanted a dog at Emmies house. That simply is not a good idea with allergies and all. So, we decided to "borrow" a dog for the day. We went and got my moms cocker spaniel. Oh my goodness did she have a blast playing and walking him. It makes me sad to know that she can not have that kind of fun everyday. Poor Riley on the other hand was quite tired since he is used to sleeping all day and Emmie would have nothing to do with that!
Now that I have vented and ranted I think I am done for the day. More updates to come soon.
Have fun.
Melissa and Em
Thursday, June 17, 2010
It's been a while!
Ok so here we go again, I think if I start from the beginning this may make more sense to both you as readers, and me as a writer. I had a pretty "normal" pregnancy with Miss Emmie. Only complication being gestational diabetes. So when I went to the OB for my last check up and he said I will meet you at the hospital in a few hours I was kind of in shock. So I did as asked and met him at the hospital and a few hours later we were blessed with a happy healthy 8lb 4oz baby girl that mom and dad could not agree on a name for. We were told that she was doing wonderful and went home a mere 36 hours after c-section delivery. About 2 weeks later we got a phone call from our new pediatrician telling us that Em did not pass the newborn screen test for Cystic Fibrosis. However, we were told not to worry, this test is only 10% accurate. We would now have to travel down to the U of M and have a sweat test done. So off we trek. We get the first test done all to find out that our little girl has come back as borderline. So as brand new parents we are scared. (Honestly I don't quite think scared cuts it) They told us to bring her back in another 2 weeks to repeat the sweat test and find out the results then. 2 agonizing weeks. I sit, I think, I wonder. What is going to happen. Is our little girl sick? Is she dying? What is this horrific thing being thrown at me just as I become a happy parent? We now go back to U of M to do the sweat test again. Our results again come back borderline. WTF? How can you possibly do this to me, to us? They then recommend that she has blood work done to confirm that my peanut has CF. It obviously came back as positive for DF508 and R117H. It could be worse though right? That is what I had to keep telling myself. So now we start with meds, and more meds, and even more meds. We get nebulizers delivered to our house. Not long after we get a vest delivered.
Now it kind of seems like a blur. Like I really don't remember anything different than life as it is today. But I am okay with that. I love our little princess (and she really is a princess) just ask her.
Currently we are having issues with sinuses. I am sick of them. Sinuses should come with a warning label especially in Michigan. With Em they decide to store mucus, thick sticky mucus at that. It then gets stuck. You know how most kids get runny, yucky noses? Not our Emmie. She gets stucky noses. Where it sounds like she is boiling thickened water in her nose. This has been an ongoing issue for us, and it is currently back. Bactrim take it away? I hope so and soon.
Our other current issue is that Em will not eat. She will eat pediasure with her bottle and that is it. I can get her to take small amounts of food however not enough to calorie count. I have come to the non-licensed nurse mom conclusion that it really does hurt her belly. She cramps. She gets gassy. It goes right through her. So who in their right mind would continually put themselves through the pain of eating solid food if it HURT to eat it? Something to talk about when we go back to clinic.
I think this is it for today (maybe this week) we will see.
Have fun reading,
Have fun!
Melissa and Em too!
Now it kind of seems like a blur. Like I really don't remember anything different than life as it is today. But I am okay with that. I love our little princess (and she really is a princess) just ask her.
Currently we are having issues with sinuses. I am sick of them. Sinuses should come with a warning label especially in Michigan. With Em they decide to store mucus, thick sticky mucus at that. It then gets stuck. You know how most kids get runny, yucky noses? Not our Emmie. She gets stucky noses. Where it sounds like she is boiling thickened water in her nose. This has been an ongoing issue for us, and it is currently back. Bactrim take it away? I hope so and soon.
Our other current issue is that Em will not eat. She will eat pediasure with her bottle and that is it. I can get her to take small amounts of food however not enough to calorie count. I have come to the non-licensed nurse mom conclusion that it really does hurt her belly. She cramps. She gets gassy. It goes right through her. So who in their right mind would continually put themselves through the pain of eating solid food if it HURT to eat it? Something to talk about when we go back to clinic.
I think this is it for today (maybe this week) we will see.
Have fun reading,
Have fun!
Melissa and Em too!
Sunday, May 9, 2010
Mothers Day
Today I am blessed to have a very beautiful, and very strong little girl. Everyday she makes me laugh, giggle, and love her even more than the day before. I watch everything that she goes through on a daily basis and wonder why? However I also know that it will make her a very strong young woman as she gets older. CF teaches kids to be strong and very loving people. I think that is it for today, just wanted to get that out there I feel like I have the most amazing daughter anyone could ask for, and would not change it for the world!
Saturday, May 8, 2010
Here we go!
So here we go. I have no idea what I am doing, or how to do this but I will give it a go! So the whole point of doing this is to keep all people updated on Miss Emmie, and secondly for me to be able to get off my chest all the frustration that goes along with a genetic disease.
Emmie had her clinic visit yesterday at U of M, and even though it was an early appointment (7:40am) it went well. She is up 3 lbs since last visit (February). Also, she is up just over an inch! Yeah for pediasure since she still isn't eating much in the line of solids. We have determined that the source of her current fever since 4-28-10 is e.coli. Wonderful I know, right? So even though we just came off a 21 day run of Bactrim we are now back on it for another 10 days to get rid of lovely Mr. E.coli. It showed up in her urine for sure, still waiting on the stool results. On top of all that funness we also have developed thrush from her Flovent, causing us to put her on oral Nystatin as well. Clinic decided also to change her enzymes because her current Ultrase MT-12 is not FDA approved. Now it is on to Creon!
A week ago Emmie had her first allergist appointment, and he decided that she is allergic to grass, trees, molds, ragweed, and mites. Even better right! So he is putting her on another med for asthma and allergies.
So I guess that is all for now, I will update more as I have the time!
Emmie had her clinic visit yesterday at U of M, and even though it was an early appointment (7:40am) it went well. She is up 3 lbs since last visit (February). Also, she is up just over an inch! Yeah for pediasure since she still isn't eating much in the line of solids. We have determined that the source of her current fever since 4-28-10 is e.coli. Wonderful I know, right? So even though we just came off a 21 day run of Bactrim we are now back on it for another 10 days to get rid of lovely Mr. E.coli. It showed up in her urine for sure, still waiting on the stool results. On top of all that funness we also have developed thrush from her Flovent, causing us to put her on oral Nystatin as well. Clinic decided also to change her enzymes because her current Ultrase MT-12 is not FDA approved. Now it is on to Creon!
A week ago Emmie had her first allergist appointment, and he decided that she is allergic to grass, trees, molds, ragweed, and mites. Even better right! So he is putting her on another med for asthma and allergies.
So I guess that is all for now, I will update more as I have the time!
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