Um, is that a Popsicle you have there dad?
Mmm, strawberry!
Ok enough, I forgot how much I hate stuff by my mouth!!I took Jax to his ped today, it was a pretty worthless trip. She has run out of ideas. He's not sick, she thinks his lungs sound ok, that all the noise is upper airway. She did say his heart murmur has been sounder louder the last couple of visits. Our echo isn't scheduled until July, she's going to try and push it up. I also told her we may be gone out of the country in July and would like to get results before then. I also asked her if I could get robinol, its supposed to dry up secretions. She said, "sure, if pulmo says its ok on Tuesday". Urgh, if I wanted to wait till Tuesday to get the robinol I would have just asked pulmo for the prescription! I want it now so I don't lose my mind until Tuesday comes! My ped has also said something else that kind of bothers me. A couple of times she said she is so happy about his seizure activity right now. Yeah it all looks good on the outside, we are seeing very little seizure activity, but the brain continues to seize out of control! Everyone thinks he's doing great, but just look at his EEG and you'll see it. I know if we could control the seizure activity he would blossom, not to mention that his brain is going to eventually die from all this seizure activity.
Do you think its possible to grow tired of your ped?
Oh, slap my hand over my mouth, I can't even believe I just said that! I adore my ped, she's been with me through the worst of the worst! She's held my hand, cried with me, how could I ever say these things? I just sometimes wonder if they see the same thing over and over if it becomes mundane? You think?
I don't know, my brain is very tired. You wouldn't believe this adoption paperwork. It kills me that these people throw these children away, but make people that want to give them loving homes jump through hoops! Its crazy. The medical paper for international is giving me major headaches. Have I mentioned that all this paperwork has to be filled out EXACTLY right? I've been to my doctors twice already, and its still not right. This Friday we go again, and if its not right this time I'm going to scream! Remember buying your first house? Well this is ten times worse! But I do know when its all done and Makayla's home I won't even remember this part!
But tomorrow's Thursday, and the auction ends Friday, so you better go get your last bids in before I close it and start our other great giveaway! I'll give you a hint on what it is, "8GB"
Oh Lacey, I bet it is not really about your ped, most other ones are going to be the same. It sounds more like the nuero you need to be bugging. Tomas has been on the robinul for about 6 months and I love it. A lot of people don't like it but it has made a huge difference for him with his saliva aspiration. Good luck with all the paperwork, it must be very tough.
ReplyDeleteLacey,
ReplyDeleteI'm sorry that things are so hard for you. Being tired makes everything that much more intense. We had a huge falling out with our pedi whom we love 4 years ago, but stuck it out, had an open dialoge about it and I'm so glad we did because I can't imagine not having him through everything we went through with Chloe the first year. I guess my point is, you won't always agree and they can't ALWAYS be great (they are human too), but if you think she's the best doc for Jax, then try to work through it. Hopefully it's just a phase. I think I held my pedi up on such a pedastal and when we disagreed on something MAJOR it rocked my confidence a little. But that was good. Allowed me to feel more of a team player in my own children's care. Sorry I'm rambling! HUGS
Oh we may go crazy together!! Hoping you guys can get in sooner to your appointment as well. I love the pictures of Jaxson!!
ReplyDeleteI can't begin to understand how you must feel, getting sick of your pead. What I do know is that GOOD peads are few and far between, so if you've got one that you trust, then stick with it.
ReplyDeleteI love those pics of Jax getting a taste of a popsicle! Cute!
ReplyDeleteI bet you aren't really sick of your Ped, you are just sick of not being able to get Jax totally well! That definitely wares on a Momma! Could you call Pulmo and ask them to call in the prescription for you and tell them that then you can see how it's working and you can talk about it with them on Tuesday?
8GB??? Sounds awesome!
Hang in there! Love and Hugs!!!
Cute popsicle pucker! I love it!
ReplyDeleteHang in there- hope things get easier!
such cute pictures.
ReplyDeleteWe used robinul for awhile with Junior but it started making him too dry. I know it works wonders with some kids though so prayers that it does the job for Jax. Hugs
Lacey, can you call the pulmonary office and ask them to call in the robinul script? We used it for a while when Peanut stopped swallowing and was aspirating and choking and her secretions. It worked great.
ReplyDeleteI imagine that you are feeling frustrated with the pediatrician, when it's just general frustration. Not being able to help our little ones is the worst feeling in the world. It doesn't seem like the pediatrician is the right person to talk about a seizure solution though, that is neuro right? What does Jax neuro say? I would push him to come up with something else for you to try.
Seizures suck. I hate them. I hate them for Peanut and I hate them for Jaxson. I hate them for everyone!
That last picture is adorable! I wish I could squeeze and give him a great big hug!
ReplyDeleteI hear you on the ped thing. Ours has kind of gotten blase about Curtis, too. I think maybe she's out of ideas? Maybe ask her and see what she says. She might be surprised with you are seeing.
Oh Lacey, I can totally understand why you'd be frustrated right now. Call up Dr. P and ask her for a script...I'm sure that if she thinks it would help, she'd call it right in. I hope your paperwork gets finished up. I can't imagine how hard that must be.
ReplyDeleteI sure you can get tired of your pedi. Never heard of Robinul yet. We were just at our pedi;s and ND today. After being there I had to mention all that has happened in 4 months which I did and she wrote down. Then we left in a rush for our next appointment and forgot the one thing that I was to supposed to ask her about. UGH!!
ReplyDeleteIt's good having the same pedi. Can you imagine switching and have to go over our medical files. Yeah! However I sometimes think someone else might have a different idea too. Never hurts to ask around and get more ideas. Who knows maybe you can find the idea or answer and bring it into your pedi.
Good luck with the lawn project. Looks like a big project.
I think you can get tired of your doctor - and sometimes a fresh pair of eyes helps. I have thought on a couple of occasions that I would switch Carter's ped - but like the other comment said - it helps to have someone who knows the whole history. Plus he has a baseline of Carter's normal - I hate going to a new doctor and all of the medical records. UGGH - sorry you are having such problems! By the way the popsicle looks yummy!
ReplyDeleteLacey, I just recently discovered your blog & I felt compelled to leave you a comment. I can relate to you on a small level in that my little boy Joshua was also born with Down Syndrome & a complete AV canal defect. The weeks we spent in the hospital following his open heart surgery were the most difficult in my life. Reading your little angel's story, I can only imagine how draining thse past few years have been for you.....mentally, physically, & emotionally. I want you to know that I am sending up prayers for you & your family. Prayers that you will be led to physicians who can help erradicate Jaxson's seizures & that he will be able to thrive & grow. God Bless you & your beautiful family, Kim
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