Tuesday, August 31, 2010
Thursday, August 26, 2010
I want to thank you all for your prayers and encouragement during our trial with Alesha's health issues. When you pray for something is nice to know if things have changed, where to give praise for answered prayer, and how to continue to pray. At least it helps me. So with that in mind I wanted to give you an update, praises, and requests. You can scroll down to the bottom of this post for the summary, but I wanted to document this for later reflection.
I need to back up a bit. Last Friday, August 20th I called the dermatologist office, because I was not seeing the results from the antibiotic and new shampoo after a week that I should have and was very concerned. After much discussion they decided to prescribe a topical antibiotic in addition to the oral one. There was also an addition of a new cleansing scrub shampoo, because Alesha had a bad reaction to the previous one.
At this point I have to share with you our daily routine. We wash hair in the morning, blow dry, and apply topical antibiotic to scalp. We then coat her body with a prescription cream and Cetaphil from head to toe to address the eczema issues on her skin. Then we proceed to the oral antibiotic and anti-itch medication. At night we do a full bath with the special shampoo, blow dry hair, apply topical antibiotic to scalp, coat body with both creams, give oral antibiotic, anti-itch meds, and then have our bottle, song, prayer and go to sleep. It is funny how well this baby girl knows the routine. She stands at the tub when she hears the water. After I get her out of the bath she lays nice and still so I can rub all the cream on her body. I think she enjoys her twice daily massages (I feel for her future husband....she is spoiled) then we get dressed and sit up to play with toys while I dry her hair. When I turn off the hair dryer she says ALL DONE! Luke walked in the bathroom the other night and said looks like she is at station 2 right now...I had to laugh! We pretty much have a 3 station routine...bath, massage, hair :-) Keep in mind I have been doing this for 2 weeks and not seeing much results in the scalp department, but her skin is back to looking nice and smooth. This makes me SO happy!
Okay, back to my phone call to the dermatologist. The nurse said she was going to call me Wednesday to see if things had improved. She called and I didn't have any good news to tell her. She said she would talk to the doctor and get back to me. The verdict is that we need to go back in for additional cultures, because the staph might be resistant to the current antibiotic now and there could be more going on since it is not cleared up. Oh joy, another trip to the doctor. I pack everybody up and head to the dermatologist office once again.
I had to laugh when we arrived for our appt as the receptionist called Alesha by name when we walked in the door and when the nurse called our name she said "I am SO sorry to have to see you today." The office staff and doctor are so sweet and have such compassion for our situation. When the doctor walked in we gave each other a hug (now that doesn't happen everyday) and we began discussing our current situation. Upon observation of our still not healed scalp she said she wanted her colleague to come in and take a look and see what her thoughts were. A fresh set of eyes might give additional insight. I have NO problem with that I just want the insanity to END!
Upon her observation she determines that in addition to the scalp infection we also have eczema issues on the scalp, too, which my doctor agreed. They both decide to take cultures to test for fungus, viral, and bacterial issues. These results will tell them exactly where we stand at this point. Her partner tells me that unfortunately the scalp and the bottom of the feet or the HARDEST to treat and take the longest to heal, BUT it WILL get better! My doctor proceeds to take some scrapings from Alesha's scalp and pull out several hairs. Alesha barely even cried, she is such a strong girl. However, she did scream when the doctors just wanted to look at her head...it must be the white coats!
So we left the office with yet a new plan of attack. Continue the oral antibiotics for now until the cultures come back (hopefully Monday), discontinue the shampoo and topical antibiotic as it is causing the scalp to dry out too much and not really helping, and start back with the scalp oil to get moisture back to the scalp and help with all the scabs, etc. Good news NO trip to the pharmacy this time. It appears that I have all the meds needed in my own little pharmacy at home :-)
1. Alesha's skin is looking great and we have discontinued the prescription cream and just coat with Cetaphil twice a day.
2. We have insurance.
3. We have great doctors with such compassion for our situation.
4. That I listened to my gut and called the dermatologist on Friday to get additional meds and that we were able to get in on Wednesday to get a new plan so Alesha's scalp didn't get more dry than it already was. It was great timing to get in on that Wednesday, because our doctor doesn't work on Thursdays and all the clinic doctors were going to a conference on Friday and I wouldn't have gotten the cultures taken and there would have been more of a delay.
5. The availability of medication and doctors here in the U.S.
6. A strong little girl who is a fighter.
7. A pharmacist who goes out of her way to help me and knows Alesha by name. She was going on her lunch break and stopped to talk to us, help me find what I needed, and then called another pharmacy to see if they carried the shampoo I was in need of because she didn't have it.
8. For 2 sweet boys who are learning to be very flexible with plans having to change due to doctor appt and pharmacy trips.
9. The antibiotic is pretty gentle on Alesha's stomach so we are not dealing with diarrhea.
1. That the results will come back soon, that the staph and strep rating have gone down, and we will know exactly what we are dealing with.
2. We will be able to resolve this problem once and for all.
3. Strength for me to continue doing all that the doctors require.
4. Help Alesha as she continues to take all the medication daily. She is getting weary and pushes it away as soon as she sees it coming....poor baby, I don't blame her one bit :-(
Thanks so much for your prayers and I will post the results as soon as I hear anything. I will also try and post some more fun and upbeat stuff on my blog :-)
Sunday, August 15, 2010
As far as the strep and staph infections are concerned we are not our of the woods yet. After the last 10 day round of antibiotics I thought we had finally fixed the problem. I had gotten all of the scabs off of her scalp and the bumps seemed to be virtually gone. Give it a couple days and the weeping began again. I couldn't believe my eyes. Within the 2 days before her appt. I knew we were in trouble. Sure enough the staph and strep are BACK! The doctor told me that they rate strep and staph on a 1 to 4 scale on how severe the infections are. She then said that Alesha's results came back with a 4+ rating for both strep and staph!!!!! I was SHOCKED to say the least!!! Apparently I wasn't the only one. The doctor and pharmacists were VERY surprised to see that number so high in both issues. I had to laugh when the pharmacist said "well it looks like your little girl is an over achiever" I guess that is one way to look at it :-) The dermatologist said that the antibiotic was working, but because it was so severe we didn't get to the bottom of the infection. We are now on round 3 of antibiotics for 21 days. If it is not completely gone by then we need to extend it another week. We also have a shampoo to help with the healing process.
I am thankful that we were able to start the antibiotics before the infection was way out of control. I can't believe how quickly (within a 24 hour period) we can go for her scalp looking fairly good, to oozing yellow. It is amazing! The doctor said that her glands in her neck were not as swollen as before, which is a good sign.
So I have made my weekly trip to the pharmacy to add to my arsenal of meds and we continue with the new plan to get our baby girl well. I am feeling more optimistic at this point and am SO thankful for doctors, insurance, and a sweet little girl who a strong fighter. She continues to laugh and smile even though all of this is happening in her little body. Praying for complete healing to come our way soon.
Saturday, August 07, 2010
When we picked Alesha up in India on May 20th she had a few spots on her head that she was scratching constantly. We thought it was just dry scalp and it would go away. Upon returning home she was still itching and her once beautifully smooth skin developed a rash. We took her to the doctor and she said that the rash was from the 6 immunization shots she was given in India and it should fade. There was no concern regarding the spots on her head either. Good enough. We waited and sure enough the first rash faded, but a new one developed. This rash was not easily identified. Alesha, saw 3 different pediatricians. It was thought that she could have scabies, but it wasn't presenting itself like usual. We were given the scabies treatment June 25th and moved forward. Alesha, continues to get WORSE! I am at my wits end and take her to a dermatologist who takes one look at her and says that is SCABIES!! I said we already treated her and she said she would confirm it for me. The doctor took some scrapings, left the room, and came back with an affirmative case of SEVERE scabies on June 30th! Alesha was covered from the top of her head to the soles of her feet with scabies! In severe cases of scabies it affects the scalp (which explains the spots on her head) and you can have nodules (large raised dots), burrows, where the scabies burrow there way into the skin, and SEVERE itching. In Alesha's case she also had small little blisters all over her body. This was explained to be her bodies reaction to the scabies :-( The new plan was to retreat Alesha for scabies as there were still eggs and poop under her skin and treat our entire family. Let the fun times roll. I cannot tell you the amount of laundry that goes along with scabies. EVERYTHING and I mean EVERYTHING (towels, toys, stuffed animals, clothes, bath mats, crib bedding, sheets, blankets, car seat covers, stroller covers, basically anything that has come in contact with the skin) needs to be washed, cleaned, or dry cleaned! One word - EXHAUSTING!!!!
The itching continues and we have a not so happy girl...I don't blame her AT ALL! Who wants to itch all the time. She even itches in her sleep. I will catch her during nap time fast asleep, yet scratching the little bit of skin that I have not covered up with clothing. At this point, what used to be her favorite time of the day, bath time, has turned into the worst. Alesha, cries the entire bath and can't wait to get out :-( The sores on her head begin to get worse and she has a ton more of them. By July 18th these sores are beginning to weep. You guessed it back to the doctor. They said it must be another reaction her body is having to the scabies. I am beside myself. They give her stronger anti-itch meds and a cream for her scalp. The NEXT day, Alesha wakes up with yellow oozing sores on her head and her eye is all swollen. She scratched her head during the night and rubbed her eyes and we now have an eye infection on top of a full blown bacterial infection on her head. I am in tears sitting in the doctors office, once again. My poor little girl has gone through so much and now this. This is now happening on top of the rash that is still there and she is teething like no body's business!
Here is what her head looked like - hard to capture the gross factor completely!
Now the other eye, too.
To me this picture captures so much. She is scratching her head, the look on her face, the best shot of what the scabie rash and nodules looked like, and her precious little face all in one picture. I think the capture should read "Please, mommy, make it stop!!"
After a few days on the antibiotic the sores begin to dry up. I am beginning to feel hopeful. We prepare to go on our first camping trip as a family of 5 and stay in a yurt (see previous post). When we arrive at the campground I notice that Alesha's head is starting to weep clear again and a few new bumps are appearing on her skin!!!!! This cannot be happening. I guess denial sets in. We have a fun day and go to sleep. By the next morning the clear weeping on her head has turned to yellow with the same horrible infection and the bumps on her body are getting more plentiful. It is obvious that we will not be staying another night as planned and make various phone calls to get in to see the dermatologist ASAP! They fit us in Friday the 30th.
As we enter the office the nurse is asking me all kinds of questions and I try to answer them through a steady stream of tears. I am so tired and so sad to see my daughter STILL going through this awful ordeal. It is truly heart breaking to see the people you love suffer, especially when they are SO tiny! She hands me a tissue and says she is so sorry and it must be so difficult. She says how absolutely adorable Alesha is and how lucky she is to be home...this makes me smile and cry harder. I will say that I am SO thankful that Alesha is home and I can hold her in my arms and comfort her during these really tough days.
The dermatologist comes in and says we are definitely dealing with a bacterial infection on her scalp. Her lymphnoids are all swollen and we need to get her on an antibiotic immediately. She gave me an oil steroid to apply to her scalp, topical anti-itch meds, in addition to the oral anti-itch and then she said IT....I almost hit the floor!!!!. Alesha, has scabies AGAIN!!!!!!! This cannot be happening. It was like the worst nightmare EVER! How is this possible???? I did EVERYTHING they told me to do, how could she possibly have them AGAIN!!!???!!! The doctor explains that in severe cases of scabies it is not uncommon for them to reoccur. She also takes a scraping of Alesha's scalp to make sure exactly what bacteria we are dealing with and will change the antibiotic if needed.
With the oil steroids they gave me a shower cap to use. I looked at the doctor and said you really want me to use this and she said no it would be okay to just rub in at night and let her sleep on it. I had to put the cap on just to see what would happen. Two things...one she looked absolutely adorable and two, she kept it on for like 10 minutes. I was shocked!
I leave another doctors office totally deflated and go the pharmacy once again, where they know be by name, for more meds to add to my arsenal! I will confess that I have officially hit my breaking point. I am sobbing by mid-day and cannot speak without bursting into tears. To top it all off I am sick, too. I try to stay focused on the good things like thanking God we have good doctors and medical care, that we have good insurance to help with all these increasing medical expenses, that Alesha still gives me that precious little smile even though I have been forcing eye drops, anti-itch meds, antibiotics, creams, etc at her for the last month or so. These things I am SO thankful for, but it doesn't fix the misery that my baby is in and there is only so much I can do to make it better. All this on top of the very thought of repeating the laundry, vacuuming, washing insanity ONCE AGAIN with this second round of scabies is more than I can bear.
We now find ourselves in August. I feel as if our summer is not what I had hoped it would be. There were so many ideas and plans for the summer, but when you have a baby with a mysterious rash and open weeping sores, you don't want to go our in public much or expose people to the unknown. I will say that our boys have been amazing through all of this. They have had to miss out on several things, but they are more concerned about their sister than themselves. I love my boys!! The antibiotics appear to be helping as the sores begin to dry up.
On August 3rd, I got the call from the dermatologist to confirm what bacteria we are dealing with and the results are STREP and STAPH!!!!!! This would explain why we have had SO many issues. At least we know what we are dealing with and I really hope that we are at the end of this skin/scalp insanity! The itching continues and on August 6th I did Alesha's 5th and hopefully LAST treatment for scabies.
It is funny how these health issues we have been dealing with are TOTALLY different than the health issues we thought we might be dealing with upon bringing Alesha home. Funny how that works. I am amazed at how resilient children can be and how Alesha will still giggle, smile, and make us laugh daily even though her little body is going through so much. We love her so much and it has been so difficult for us to watch her deal with all this. We thank God for his provision during this trial and hope that September will begin a new chapter of good health for the Pfeiffer family.
Thursday, August 05, 2010
Sunday, August 01, 2010
Here is one of the waterfalls we hiked in to. It was such a beautiful day.
Some things we have learned about Alesha in the last month -
1. She doesn't like berries or really anything sweet.
2. When you tell her NO she will say uuuuuu-oooooooooo!
3. She loves to blow kisses.
4. She is quite the climber. She motored up our 13 steps to the upstairs (us CLOSE behind) The gate will be put up pronto!
5. She loves to walk around holding onto our hands. She pushes her little baby carriage around and walks pretty good while holding on to it.
6. She can stand in one place for a good 30 seconds.
7. She says "HI" to everybody and it is simply adorable.
8. She waves bye-bye and if really excited waves with both hands!
9. She still loves WATER.
10. She is eating much more and eats much faster...this is a huge blessing.
11. She weighs in at a whopping 16 pounds and wears a size 6-9 month clothes.
12. Still not a fan of cold things. When given ice cream the faces she makes are hilarious, but you would have thought we gave her dirt or something really gross.
13. When finished eating, bath time, or diaper changes she will say AAAALLLLLLLL Done.
14. She adores her brothers and watches their every move.
15. Her favorite things to say is AAAHHHHH-DAH. Sure wish I new what that meant, she says it constantly.
16. She has 4 teeth on top and 3 teeth on bottom. One of the three is a HUGE molar....OUCH! She is working on the other molar and couple more teeth, too.
17. Her favorite foods are bananas, squash, crackers, Indian food, and trying bites of new foods all the time.
18. She has finally figured out how to bite stuff. She will take a bite of a cracker now.
19. She has several little games she plays with her daddy. It is so sweet to see them together. She definitely has daddy wrapped around her finger :-)
20. When I change her diaper I always count to three and then rip off her pants, shorts, skirts, really quick and toss them up and she cracks up EVERY time. Then she takes them and plays peek-a-boo with me. When I'm done changing her diaper I will say give me your legs and she will lift them up so I can put her pants back on. Super fun and cute.
21. Playing peek-a-boo will provide hours of entertainment.
22. She loves to clap her hands and say YAY!
23. This girl LOVES music!!!! All kinds of music. She loves to watch her brother, Martin play the guitar and every time she hears music she starts rocking back and forth and if she is standing up she swings her hips from side to side. We may have a dancer on the horizon :-)
24. She can crawl wicked fast when she sees something she wants.
25. Her favorite pass time is emptying out the diaper bag or anything that is filled with something.
Alesha is so much fun and we look in awe at her daily. We are so thankful she is home and we can watch her grow-up right before our eyes. I am so thankful for her birth mother who chose life her baby girl. The decision to put her up for adoption must have been SO difficult. I think of her today as the first of every month she must wonder where her baby girl is and how she is doing. To her I say thank you for your gift of Alesha and know that she is loved beyond measure and is a very happy little girl. I love you Alesha!