Last night we took the kids to see MIB3 or Men in Black 3 in 3D they had a blast. This was our birthday trip to the movies for Zach's 8th birthday. He and Ellie have been talking about MIB3 ever since they found out about the movie coming out and have been dressing in all black so they are ready and perfect for the movie. The silly kids.
Ellie thought MIB3 was AWESOME!!! She loved how everything was fixed and Agent K came back to life.
Zach said the movie was a nice birthday present. I liked how J goes back in time. I thought that he was gonna splat but he did not.
Jairon: my favorite part was when Griffin touched the General and showed him what they needed to do to protect the world.
Corbyn: My favorite part was seeing Boris get roasted in the end.
Saturday, May 26, 2012
Wednesday, May 23, 2012
One Normal Day Please???
I am SO ready for the crazy insane days to end and end now. While I LOVE the specialty teams we have and John Hopkins, I really need to stop finding out how great they are. Today as Corbyn's hemo apt was ending we were out in the lobby getting ready to leave to and discovered the keys were missing. They were TOTALLY gone!!!
I was checking through my backpack, Ellie's activity bag, everything when the hematologist comes out and Corbyn tells him the keys are missing. He took Corbyn everywhere we had been and helped look for the keys. He spent a good 20 minutes helping us look for the keys and his nurse was with Ellie while one of the Security guards was looking in other places.
When after nearly an hour we had not found them we went to the main guards station on the main floor and the one guard who was supposed to be getting off started calling to find a way for us to get home. He made arrangements for the cleaning crew to look for the keys as well while they cleaned the entire clinic in case a small child picked up the keys and wandered off with them.
Corbyn and Ellie were allowed to color and play games while we continued to look for the keys. Finally 2 1/2 hours later John Hopkins had arranged for us to get home by taxi (paid for by a voucher by the hospital) and the same guard that was now working 2 1/2 hours overtime was making arrangements for us to be picked up. Just as he was being connected with the taxi company supervisor one of the cleaning crew came running up the stairs asking if we had a yellow lanyard on our keys. In turn I asked there was also black thing with silver clip with an army logo. With this news I was SO very excited because at the VERY last minute our keys were found!
What I do not understand is 1: HOW in the world my keys ended up getting separated from me in the first place. 2: WHY they were not found the first 4 or 5 times we looked the exact spot 2 1/2 hours prior to this last time. 3: WHY our trip home had to be delayed like it was. However, whatever the reasons we made it home safely and I am so grateful to have those keys right about now!!
I was checking through my backpack, Ellie's activity bag, everything when the hematologist comes out and Corbyn tells him the keys are missing. He took Corbyn everywhere we had been and helped look for the keys. He spent a good 20 minutes helping us look for the keys and his nurse was with Ellie while one of the Security guards was looking in other places.
When after nearly an hour we had not found them we went to the main guards station on the main floor and the one guard who was supposed to be getting off started calling to find a way for us to get home. He made arrangements for the cleaning crew to look for the keys as well while they cleaned the entire clinic in case a small child picked up the keys and wandered off with them.
Corbyn and Ellie were allowed to color and play games while we continued to look for the keys. Finally 2 1/2 hours later John Hopkins had arranged for us to get home by taxi (paid for by a voucher by the hospital) and the same guard that was now working 2 1/2 hours overtime was making arrangements for us to be picked up. Just as he was being connected with the taxi company supervisor one of the cleaning crew came running up the stairs asking if we had a yellow lanyard on our keys. In turn I asked there was also black thing with silver clip with an army logo. With this news I was SO very excited because at the VERY last minute our keys were found!
What I do not understand is 1: HOW in the world my keys ended up getting separated from me in the first place. 2: WHY they were not found the first 4 or 5 times we looked the exact spot 2 1/2 hours prior to this last time. 3: WHY our trip home had to be delayed like it was. However, whatever the reasons we made it home safely and I am so grateful to have those keys right about now!!
Tuesday, May 22, 2012
Oy Vey...What a Day!!!
Well I have literally had a full day of appointments again. Two kids down with the EFMP paperwork. I left Jairon's EFMP appointment with just his paperwork. For Jade I left with referrals for specialists that she needs to be following up with some lab orders. (sigh)
Then I grabbed Zach and Corbyn from school (I already had Ellie as she missed school again) I knew Zach had a GI appointment but not about Ellie's apt today... (the clinic forgot to let me know they placed her on the schedule too (oops).
We talked about Zach's allergy issues, his reflux issues and how we are suspecting his nissen may have slipped or loosened. The GI agrees and has planned to get him scheduled for an upper GI. If the meds have not helped enough by the July GI, they will scope and test him for EE as well based off our family history.
Then we talked about little miss Ellie. She is getting compacted again and is clearly NOT gaining weight. The GI is concerned about that, yet at the same time concerned about using polycose for weight gain. She is concerned more about the constant blockage issues even on the Neocate, the constant need for Miralax, and we have added other things to try for now. Just before her surgery she was 45lbs and is now hovering at 40lbs. We can't get her to get more or keep weight on.
Also then next time she runs a fever or shows weight loss then we are to coordinate with her and our pediatrician, and the John Hopkins ER to have her admitted via a direct admit. Using this process they can get specific tests ordered in the ER and have then run as stat orders. Then from there they can bypass our insurance regs for admittance and keep her there as long as needed to figure our why she can't gain weight and is running fevers for no reason. Also they will change out her g-tube to the G-jet and see if this method does not allow her to get some weight on.
At this point our insurance will only allow one day. However a direct ER admit will allow them all the time they need to figure out what is going. So for now I can't give any motrin or tylonel as we need to let her run fevers and see where it will go and how high. We are also stopping the periactin to see if that makes any difference at all or not.
Oh and the GI dr game me her cell number to keep in contact and an extra business card for the peds dr so she and he can communicate one on one about Ellie and put together a solid game plan about what to do with her.
By the time we were finally done with GI we rushed as fast as we could over to the Eye clinic for Corbyn's follow up from the ER visit for his severe allergy attack this weekend to see if we could still be seen. His appointment was scheduled for 3:45, it was now 5:30 as we were leaving GI. We arrived and found where we were supposed to be at 5:40. The eye dr was still there and willing to see him.
She was impressed with how much better his face was looking and said we can start to slowly taper the steroid eye drops. She is also glad we are in the process of getting him into an allergy specialist due to the severity of his attack.
The poor kid suffered such a bad allergy attack that it left both eyes, eye lids, and eyeballs severely swollen. Also due to his ITP he had bruising on the face, small blood vessels in the eyes were leaking. He was a severe mess. At first the eye dr was worried about damage to both eyes. Thank heaven no eye damage was sustained in the attack. I am now wishing I took a picture of his face like she did just for a before and after picture.
We follow up with the eye dr for Corbyn in 2 weeks.
Then I grabbed Zach and Corbyn from school (I already had Ellie as she missed school again) I knew Zach had a GI appointment but not about Ellie's apt today... (the clinic forgot to let me know they placed her on the schedule too (oops).
We talked about Zach's allergy issues, his reflux issues and how we are suspecting his nissen may have slipped or loosened. The GI agrees and has planned to get him scheduled for an upper GI. If the meds have not helped enough by the July GI, they will scope and test him for EE as well based off our family history.
Then we talked about little miss Ellie. She is getting compacted again and is clearly NOT gaining weight. The GI is concerned about that, yet at the same time concerned about using polycose for weight gain. She is concerned more about the constant blockage issues even on the Neocate, the constant need for Miralax, and we have added other things to try for now. Just before her surgery she was 45lbs and is now hovering at 40lbs. We can't get her to get more or keep weight on.
Also then next time she runs a fever or shows weight loss then we are to coordinate with her and our pediatrician, and the John Hopkins ER to have her admitted via a direct admit. Using this process they can get specific tests ordered in the ER and have then run as stat orders. Then from there they can bypass our insurance regs for admittance and keep her there as long as needed to figure our why she can't gain weight and is running fevers for no reason. Also they will change out her g-tube to the G-jet and see if this method does not allow her to get some weight on.
At this point our insurance will only allow one day. However a direct ER admit will allow them all the time they need to figure out what is going. So for now I can't give any motrin or tylonel as we need to let her run fevers and see where it will go and how high. We are also stopping the periactin to see if that makes any difference at all or not.
Oh and the GI dr game me her cell number to keep in contact and an extra business card for the peds dr so she and he can communicate one on one about Ellie and put together a solid game plan about what to do with her.
By the time we were finally done with GI we rushed as fast as we could over to the Eye clinic for Corbyn's follow up from the ER visit for his severe allergy attack this weekend to see if we could still be seen. His appointment was scheduled for 3:45, it was now 5:30 as we were leaving GI. We arrived and found where we were supposed to be at 5:40. The eye dr was still there and willing to see him.
She was impressed with how much better his face was looking and said we can start to slowly taper the steroid eye drops. She is also glad we are in the process of getting him into an allergy specialist due to the severity of his attack.
The poor kid suffered such a bad allergy attack that it left both eyes, eye lids, and eyeballs severely swollen. Also due to his ITP he had bruising on the face, small blood vessels in the eyes were leaking. He was a severe mess. At first the eye dr was worried about damage to both eyes. Thank heaven no eye damage was sustained in the attack. I am now wishing I took a picture of his face like she did just for a before and after picture.
We follow up with the eye dr for Corbyn in 2 weeks.
Wednesday, May 16, 2012
Food Trials Begin!!!
We had our ENT post-op today and Ellie is SO excited because she gets to start reintroducing thick (but soft) pureed foods (no liquids yet). We are instructed to take the food introduction slowly and make sure we have her only eat a couple bites at a time and only one food at time to make sure she is not reacting to the food. Each new food is to be the pure food or stage 1 baby food for now.
Because Ellie has been on slow drip continuous feeds for over the last 3 months, her tummy is no longer used to having food or substantial volume amounts. In fact she is to the point of not really feeling hunger. She only says she is "hungry" because her pump alarms due to the feeding bag being empty.
Ellie is so excited to have the chance to trial foods and be able to simply taste foods even in small amounts. At this point, we do not know how or if this will work. We also do not know how badly her body will react to the reintroduction of foods back in her body. We will have to take this slowly, carefully, and monitor her carefully for any reaction with all foods as they are introduced.
As long there are no reactions we will be able to introduce a new food every couple of weeks. So now this adventure begins :)
If after 3 months she is not having increased lung infections then we can consider introducing thickened liquids before trying or considering thinner liquids.
The ENT wants to take the liquids slower due to size the cleft that was repaired and the history of aspiration related lung damage and disease.
Because Ellie has been on slow drip continuous feeds for over the last 3 months, her tummy is no longer used to having food or substantial volume amounts. In fact she is to the point of not really feeling hunger. She only says she is "hungry" because her pump alarms due to the feeding bag being empty.
Ellie is so excited to have the chance to trial foods and be able to simply taste foods even in small amounts. At this point, we do not know how or if this will work. We also do not know how badly her body will react to the reintroduction of foods back in her body. We will have to take this slowly, carefully, and monitor her carefully for any reaction with all foods as they are introduced.
As long there are no reactions we will be able to introduce a new food every couple of weeks. So now this adventure begins :)
If after 3 months she is not having increased lung infections then we can consider introducing thickened liquids before trying or considering thinner liquids.
The ENT wants to take the liquids slower due to size the cleft that was repaired and the history of aspiration related lung damage and disease.
Thursday, May 10, 2012
Yay We have kinda normal lungs!!!
We just got back from our pulmonary post-op follow up with Ellie and well for the first time in her life her lungs are finally looking great!! Not only did the bronchs come back great but her lungs at this point are looking and sounding great as well.
We are for the 1st time in her life looking at a chance of cutting back on some of the pulmonary meds in 4 months if we are able to keep her off steroids and antibiotics for lung related illnesses for the next 4 months.
The doctor is sure her weight issues we are dealing with at this point are not lung related. He is sure her lungs are as close to "normal" as they will ever be for her. For us this is the best news we could have heard.
When she left the NICU at 6 weeks of age she left with about 25% overall lung function and we were told somewhere around the age of 6 we would know if her lungs would grow healthier or not. By 8 weeks of age she was fully dependent on oxygen and she would not get back off again until she was 4. She has been on oxygen many times again due to illness or procedures in the hospital but she was blessed to not have to come home again with oxygen.
Now our big challenge is to get her GI issues solved and find out why she is not gaining weight again...
We are for the 1st time in her life looking at a chance of cutting back on some of the pulmonary meds in 4 months if we are able to keep her off steroids and antibiotics for lung related illnesses for the next 4 months.
The doctor is sure her weight issues we are dealing with at this point are not lung related. He is sure her lungs are as close to "normal" as they will ever be for her. For us this is the best news we could have heard.
When she left the NICU at 6 weeks of age she left with about 25% overall lung function and we were told somewhere around the age of 6 we would know if her lungs would grow healthier or not. By 8 weeks of age she was fully dependent on oxygen and she would not get back off again until she was 4. She has been on oxygen many times again due to illness or procedures in the hospital but she was blessed to not have to come home again with oxygen.
Now our big challenge is to get her GI issues solved and find out why she is not gaining weight again...
Wednesday, May 2, 2012
Littlest Princess Biopsy Results
Just heard back from the GI dr about the biopsy results. The results were "mostly" normal. However there are swollen lymph nodes throughout the colon, the stomach and esophagus show signs of high stomach acid.
The celiac test came back negative, she was negative for EE, however something else in addition to the swollen lymph nodes and the ileus combination is treated the same as EE so we are going on the same EE treatment plan.
She is ordering a bunch of blood work, a urine test to rule out a silent UTI, once all that comes back she will put her on a longer dose of antibiotics to get the bacterial overgrowth in her stomach and colon under better control. Also we may have to do another bronch to clean out her lungs and make sure her fevers are not due the introduction of a viral or bacterial infection that is just lingering due to her lower immune system.
For blood work she is ordering two tests one for inflammation and one for chronic inflammation, immune globulin levels, kidney function, protein levels, and several others. She is trying to find out why she is loosing weight instead of gaining. Also depending on the results of the test results she may bring her in sooner then her scheduled apt.
She apologized for taking so long to get back with us and called us back after hours, after she had a chance to read through her records again.
So here we still remain in the idiopathic realm.. Yet we hope to one day to move from idiopathic to diagnosed. Yes that would be so nice...
The celiac test came back negative, she was negative for EE, however something else in addition to the swollen lymph nodes and the ileus combination is treated the same as EE so we are going on the same EE treatment plan.
She is ordering a bunch of blood work, a urine test to rule out a silent UTI, once all that comes back she will put her on a longer dose of antibiotics to get the bacterial overgrowth in her stomach and colon under better control. Also we may have to do another bronch to clean out her lungs and make sure her fevers are not due the introduction of a viral or bacterial infection that is just lingering due to her lower immune system.
For blood work she is ordering two tests one for inflammation and one for chronic inflammation, immune globulin levels, kidney function, protein levels, and several others. She is trying to find out why she is loosing weight instead of gaining. Also depending on the results of the test results she may bring her in sooner then her scheduled apt.
She apologized for taking so long to get back with us and called us back after hours, after she had a chance to read through her records again.
So here we still remain in the idiopathic realm.. Yet we hope to one day to move from idiopathic to diagnosed. Yes that would be so nice...
Monday, April 30, 2012
I took Ellie into see her peds dr again this morning about her digestion and fever issues. He could not find any logical reason for the fevers or her tummy issues.
However, Dr M did say that our clean out with the Miralax may have done the trick. He is so happy that we are using half the Miralax that we have been having to use with her...
There was no sign of infection, her ears, nose, throat, everything clear. Her tummy was soft, great bowl sounds, and talkative tummy. Pushing on her tummy got some gas moved around and to release. The relief for Dr M was that he did not have to send her Baltimore and recommend admittance to figure out what is going on. He is very puzzled as to what is going on though.
His main recommendation is to ask the GI/ENT team if her test results indicate chronic inflammation and those results are an indication of chronic or are a reason for reoccurring or underlying fevers.
We also are not sure why her energy levels are so up and down. One day her energy levels are normal and she plays fine and hard like her friends. Then the next she is totally wiped and has minimal energy.
Saturday she was able to go out with her brothers and sisters and dad on the archery range and learn about archery for a few hours. Afterwards she played with her friends in the neighborhood. Yesterday she was wiped and exhausted. Slept off and on throughout the day. Today she is still exhausted and had nap this afternoon. She has spent the day resting on the couch. Hopefully tomorrow she can attend school again.
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