Today we saw the dr for the second time. This time with Corbyn for his school physical. Before we got started he asked if it was alright to take sometime of Corbyn's appointment to discuss Miss Ellie and some information that was unable to be covered yesterday.
He let us know that he had arrived at 4am to cover the 300+ pages that had arrived from Children's in CO with the most important information for him. He still had some questions so he had called Dr. D her pulmonary specialist back in CO to get some more information on her. Dr. D knew enough about Ellie without looking at her records and was able to give enough background history on her and fill him in on the laryngeal cleft issue and the procedure used to help fix the issues even if temporary.
With more information about our littlest princess he was able to develop a better game plan and get the needed information to ensure the referrals are and she is able to see the specialists quickly here.
Moving onto Corbyn he has already spoken with a hematologist that he wants Corbyn to be seen by. Turns out this is also one that Dr H back in CO has been working with on a consultation basis to ensure he was getting the best care he needed. He already knew what blood work to order. He has also ordered a scoliosis xray exam due to some odd bending in his back. He has the referral to the new dr already requested and knew what blood tests needed to be requested. He ordered a full panel screening for lots of including full metabolic counts, and how the bone marrow is working. Because dad just returned from Afghanistan he also ordered a TB test. The kid had 5 vials of blood work drawn..
The apt today took half the school day however, I feel this dr is not only going be really good but careful and complete with each of the kids. He worked through his lunch hour to make sure everything was covered on both kids.
We are highly impressed with him and he has only seen 2 of the kids so far.
Tuesday, November 15, 2011
Monday, November 14, 2011
Peds apt update on Ellie
We had Chantelle's peds follow up and her lungs are sounding better, even though she is still needing her breathing treatments before and after school and before bedtime.
She was so good for her new doctor and made him laugh at her witty charming manner several times. Her lymph nodes in her throat are no longer swollen. The longest part of the appointment was filling out the paperwork to allow her to have her meds at school. We ended leaving before the paperwork was filled out. Because of the nebulizer, spacer, feeding tube, feeding pump, epi-pen, and simply thick, soy milk, and other needs at school we had to fill out 10 med sheets for the school to allow for her needs.
He is writing up referrals for her to be seen at John Hopkins Children's Hospital for pulmonary, GI, and ENT. We will have to get used to traveling again as we got spoiled in Colorado living only minutes from the hospital.
She was so good for her new doctor and made him laugh at her witty charming manner several times. Her lymph nodes in her throat are no longer swollen. The longest part of the appointment was filling out the paperwork to allow her to have her meds at school. We ended leaving before the paperwork was filled out. Because of the nebulizer, spacer, feeding tube, feeding pump, epi-pen, and simply thick, soy milk, and other needs at school we had to fill out 10 med sheets for the school to allow for her needs.
He is writing up referrals for her to be seen at John Hopkins Children's Hospital for pulmonary, GI, and ENT. We will have to get used to traveling again as we got spoiled in Colorado living only minutes from the hospital.
Recipe for a Military Wife
RECIPE FOR A MILITARY WIFE
1-1/2 Cups Patience
2 Tbs. Elbow Grease
1 Lb. Courage
1 Cup of Tolerance
Dash of Adventure
Marinate frequently with salty tears and pour off excess fat. Sprinkle ever so lightly with money, kneading dough well until payday. Season with international spices. Bake for twenty years or until done.
Serve with pride!
Saturday, November 12, 2011
Upcoming Appointments Going To be a CRAZY Month here...
This is also for record and for me to help remember but we have a crazy appointment schedule coming up over the next several weeks. What I hate most of all about moving is getting set up with new dr's and facilities. Not only that but learning my way around a new town, set of towns, wait lists, and such.
Nov 14th 7:45am Ellie sees her Dr for her school physical, med forms to be filled out, DME requests for Apria, Referral requests for her to be seen by specialists at John Hopkins for her lungs, laryngeal cleft issues, aspiration issues, feeding tube needs, and other issues.
Nov 14th 2pm med refills until I can see my pain management clinic
Nov 15th 10:45 Corbyn, school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for hemo, ITP issues
Nov 17th Mammo/Ultrasound Right breast lump Upper Chesapeake Dr
Nov 18th 12;45 GYN Harve De Grace
Nov 18th 2pm GYN ONC University of Maryland Baltimore
Nov 21st 12:45 Jade school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma, autism
Nov 21st 1:30 Zach, school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma
Nov 22nd 12:45 Jairon school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma
Nov 22nd 1:30 Celidah school physical, med form to be filled out,
Nov 28 1:00 GI Upper Chesapeake Dr
Jan 11th 12:45 Endocrinology (Diabetic specialist for Hypoglycemia) Upper Chesapeake Dr
Nov 14th 7:45am Ellie sees her Dr for her school physical, med forms to be filled out, DME requests for Apria, Referral requests for her to be seen by specialists at John Hopkins for her lungs, laryngeal cleft issues, aspiration issues, feeding tube needs, and other issues.
Nov 14th 2pm med refills until I can see my pain management clinic
Nov 15th 10:45 Corbyn, school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for hemo, ITP issues
Nov 17th Mammo/Ultrasound Right breast lump Upper Chesapeake Dr
Nov 18th 12;45 GYN Harve De Grace
Nov 18th 2pm GYN ONC University of Maryland Baltimore
Nov 21st 12:45 Jade school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma, autism
Nov 21st 1:30 Zach, school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma
Nov 22nd 12:45 Jairon school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma
Nov 22nd 1:30 Celidah school physical, med form to be filled out,
Nov 28 1:00 GI Upper Chesapeake Dr
Jan 11th 12:45 Endocrinology (Diabetic specialist for Hypoglycemia) Upper Chesapeake Dr
I Just CAN"Tt Become A Stupid Teen!!!
The other day Jade was having an unusually emotional day and freaking out about turning 13 and hitting the magical number of stupidity. Carefully and cautiously her father and I was doing our best NOT to let her know that we were struggling NOT to laugh at her dilemma.
Her genuine tears did help us with NOT laughing at her until after our conversation with her and sending her out to play.
Her issue: Through her tears she let us know that she worried as soon as she turns 13 she will become a stupid teenager. As she told us "Teens are stupid, do not listen, yell, scream, are selfish, arrogant, rude, and just gossip about everything. I just can't become one of those stupid teens! I am turning 13 and will get the stupid gene on my 13th birthday! What can I do to stop and prevent this? How can I make sure I am a good and smart teen and not a stupid one?"
The poor child was so desperate for answers on how to prevent herself from becoming a stupid, selfish, arrogant, screaming, teenager, that all she could focus on are the negatives of growing. We discussed with her the positives of the fact that she has her own brain, she can make her own choices and can learn to decide for herself if she is going to be like the teens she knows or choose to be who she wants to be.
Finally, after talking with her for a while we got her calmed down and were able to get her to go out and play. Once she did go and play Frank and FINALLY had our laugh over her freak out reaction over turning 13... Gotta love kids and the things they realize and freak out over.
Her genuine tears did help us with NOT laughing at her until after our conversation with her and sending her out to play.
Her issue: Through her tears she let us know that she worried as soon as she turns 13 she will become a stupid teenager. As she told us "Teens are stupid, do not listen, yell, scream, are selfish, arrogant, rude, and just gossip about everything. I just can't become one of those stupid teens! I am turning 13 and will get the stupid gene on my 13th birthday! What can I do to stop and prevent this? How can I make sure I am a good and smart teen and not a stupid one?"
The poor child was so desperate for answers on how to prevent herself from becoming a stupid, selfish, arrogant, screaming, teenager, that all she could focus on are the negatives of growing. We discussed with her the positives of the fact that she has her own brain, she can make her own choices and can learn to decide for herself if she is going to be like the teens she knows or choose to be who she wants to be.
Finally, after talking with her for a while we got her calmed down and were able to get her to go out and play. Once she did go and play Frank and FINALLY had our laugh over her freak out reaction over turning 13... Gotta love kids and the things they realize and freak out over.
Wednesday, November 9, 2011
YAY Returning to school tomorrow!
YAY!!! Chantelle Finally got the green light (even with her cough) to return to school after 3 days out of school. I am thinking I may have to have a letter written to the school telling them they have to let her stay in school while coughing due to her chronic cough. We had such a letter that we had to carry with us at all times while in CO due to Corbyn's hemo treatments. This letter allowed her access to places that most children with a cough were NOT allowed access to.
Due to her lungs and the state they are in and the fact that we can't control how much or how often she is going to be coughing this may be a required medical document. We may also have to make them make an exception due to her intermittent fever issues as well. How is this child going to be able to attend school when her body just randomly runs fevers for no reason? Also what about the 2 hour fevers she gets? She has been known to the run fevers for a very short period of time and it stops as suddenly as it starts.
Then on the other hand she has a double ear infection, upper respiratory infection, UTI, and other infections WITHOUT running even a slight fever. This child has been known to stump the National Jewish Doctors... LOL So what is the school nurse to do with her...
Due to her lungs and the state they are in and the fact that we can't control how much or how often she is going to be coughing this may be a required medical document. We may also have to make them make an exception due to her intermittent fever issues as well. How is this child going to be able to attend school when her body just randomly runs fevers for no reason? Also what about the 2 hour fevers she gets? She has been known to the run fevers for a very short period of time and it stops as suddenly as it starts.
Then on the other hand she has a double ear infection, upper respiratory infection, UTI, and other infections WITHOUT running even a slight fever. This child has been known to stump the National Jewish Doctors... LOL So what is the school nurse to do with her...
Tuesday, November 8, 2011
Another day home for Ellie
well our little princess is staying home another day. She is still running a fever tonight and has been needing her breathing treatments every few hours. She is going to be disappointed not to go to school again. But she sees the dr tomorrow afternoon. SO hopefully we will have a better idea what is going on with her and her intermittent fevers again. Hopefully also this dr can sign the school forms allowing her to have the needed meds in school and get us a referral to the peds pulm dr's at the University of MD. I hear they are really good there...
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