jueves, 29 de marzo de 2012

Another Elisenia Update


I am writing this e-mail to update you on Elisenia. A lot has happened since I last updated you.

My husband's aunt stayed with us for the month of February and helped out with Elisenia and other things. She was scared of Elisenia and I really had to pressure her to hold her. I tried to encourage her by asking her to hold my baby and holding Elisenia and she grew less and less scared. She was mostly scared because of the possibility that Elisenia has HIV, and also because of her ongoing cold, sometimes even with blood coming out of her nose, and her cleft foot. Elisenia has ongoing congestion that it seems near impossible to get rid of. Through her history in medical facilities, it seems as though she may aspirate and this is why she stays congested. The only time I have seen her not congested is when she left the Santiago Children's Hospital where they did not let her take a bottle for several days. But they also did not tube feed her, so we were worried about her little malnourished body. But after seeing that they were onto something with not letting her eat, as far as her congestion goes, it seems to make sense that she is aspirating and perhaps a time period of tube feeding would be necessary??

Elisenia's face has to be cleaned continuously because she has such a runny nose. We have given her various different cold medicines which seem to help , but nothing completely gets rid of it. She also came to us with pink eye, which my kids contracted, I contracted, my husband and his aunt contracted, and others who frequent our house contracted as well, haha. We all got over it with eye drops but her eyes stayed gunky and in need of drops for much longer than everyone else's.

She has a great appetite and eats most things, although she still only has four tiny teeth. I, unfortunately haven't been able to weigh her because we don't have a scale and the doctor's office apparently wasn't working when we went to get her PSR test done. She can sit up well and reach to grab items in front of her, but she doesn't show much interest in crawling or moving around in any other way yet. I spoke to a friend who co-founded and directs an organization called
Health Horizons International and she sent me some suggestions as far as organizations that could potentially help out with her cleft foot operation, so I will be looking into that.

So I mentioned before that although her HIV test came out positive, this test really only measured the presence of antibodies, which are present in babies whose mothers are HIV positive. A definitive test where blood is drawn from one's foot is needed to test the presence of the actual virus, which is called PSR. This day, I was confused as they sent me around with prescription papers. I kept telling lab people that I had been sent to do a PSR test, blood drawn from the foot. They swifted us along, took blood from her wrists, and only tested for Hepatitis and other things. I knew that Ceprosh (the HIV clinic) had sent blood to Santiago, but thought this was for her CD4 test. However, I obeyed and came back in a few weeks.

When I came back to check on the results, I found out that I was right. No blood had been sent off for her PSR, just for her CD4. CD4 measures a level of certain cells to determine how advanced the disease is. I spoke only to the psychiatrist, not the doctor, but she said that Elisenia's CD4 test came out perfect, just like someone who is HIV NEGATIVE. I said, "So if someone has HIV, even if it's not very advanced, it comes out very different than this?" She said, "Veeeerrrry different." She then ordered the PSR test, which we came back to get done. I was first told that the results would be back in 18 days... then told to come back in a month. I believe it has been a month and still no results.. :( So we're still waiting.

So after my husband's aunt went back to her family in Santiago, I cared for Elisenia for a few days, which was very difficult because, again, we have a 2.5 year old, a 6 month old, and are fostering another 2 year old. So many diapers to change, baths to give in a house without running water, and tears to be dried. I did not hire a new caregiver because funds had run out and we had a volunteer group come on March 4th. I wouldn't be able to oversee a new caregiver and my husband was honestly fed up with Elisenia being in our small apartment on top of everyone else. He was not fed up with everyone else, but Elisenia just didn't fit in as much with her special needs.
Here's a video so you can see what I mean. We had no funds to rent a separate facility to have her. I e-mailed the organizer of the volunteer trip to let her know of this situation before they arrived. Then, upon their arrival, I introduced them to Elisenia and asked if they would agree to me leaving her at our hostel where they would be staying. They agreed, but were a little nervous. The man who oversees the hostel, Luckner, was one of the people who took shifts staying overnight with Elisenia in the Santiago Children's Hospital when we first took her in, so he is a reliable caregiver, but also busy with other things, and I pushed the group to care for her, to carry her around with us during the days, etc. They were not interested in changing diapers and left those for me, but did buy and administer more eye drops and cold medicine. I tried to see if she could go back to Transformation House for a bit but Transformation House is really a medical facility, not an orphanage, and they already have had other children abandoned that they care for. So it was not possible. My husband pushed me to return Elisenia to her mother, if just for a bit, and I feared to do so because I didn't want the support for Elisenia and the support for her mother to get confounded. Our organization paid rent for Elisenia's mother for three months after she was widowed in November and helped out some with food, but can't set an example in the community of continuing to support her, which she would need some support in order to care for Elisenia properly. However, I was thinking about it as I didn't think the group did not really receive the task joyfully or confidently, and I wanted to keep the peace.

When I traveled with volunteers to Muñoz to do activities in the school, many adults approached me to ask about Elisenia and let me know that Zette had disappeared. A few weeks earlier Zette, Elisenia's mother, had asked me for transportation money to go see family in Santiago, saying she would return right away, but she just needed to talk to them and ask them for help with debt she had acquired before her husband passed away. People were coming after her every day for money she owed them. I talked to her seriously about coming right back because she herself had said that she can't leave her three kids still with her in the house alone. But apparently she never returned. This was March 5th that I found this out. She still has not returned and no one has heard from her. The kids (9, 6, and 5) are home alone. The 6 year old's sponsor sent care packages for them and some food for money which I am managing to help them out a little when I see them. Their thank you videos can be viewed
here and here. We try to get them to go to school but they come sporadically. We were able to provide two school meals before the short vacation they are now on and hope to be able to keep it up as this provides kids like this at least a little security. They stay in the house all by themselves! I pray that Zette gets herself together and comes back to raise her children. The last we spoke, we were planning on when to meet at Ceprosh so she could get her CD4 test done and get on meds. She said that she would have to do that when she came back...

After the volunteer group left, I was exhausted, left Elisenia in Luckner's care for a few days, and thought of what to do next. I had a plan for renting a little place nearby, but again, funding was an issue. During these few days, I was visited by
a woman seeking help for herself and her two babies. I since have formulated ideas as to how I/Project Esperanza can help her, but how she can help us as well. I didn't act yet and wasn't able to. Oh, I actually forgot. The cook that cooked for the volunteer group was helpful with Elisenia as well - not scared at all. She let me know that she was staying in a dirt floor room in Muñoz that really wasn't suitable. I made arrangements with her to stay at the hostel and care for Elisenia even after the group left. She agreed and I was able to offer her minimal pay since it would be a step up from her already poor living conditions. However, she requested time off for church. This fell through just as another group was set to come because she was told that her son who had been sick in Haiti had gotten worse and she should go immediately. So she did. However, during the days she cared for Elisenia, she gave her exceptional care. I hope that her son is okay.

Luckily, also during these few days, a guest who had booked well ahead of time came to stay at the hostel. Nikki has lots of volunteer experience and a heart for the special needs community, and she came just at the right time. She didn't come to volunteer but to visit a family she supports. But she met Elisenia upon arrival, knowing that she would be there, but thinking that she would have a caregiver. Upon finding out that she didn't, many people could've said, "I just came to stay at a hostel.. I didn't plan to have a sick baby crying throughout the night in the room next to me." But Nikki said, "Will you leave her here this week so I can snuggle with her?!" Whew, thanks again Nikki. And she didn't only snuggle with her, but changed her daipers, bathed her, gave her lots of attention, and bought and administered her medicine.   

A few days after Nikki's arrival and a few days before her departure, another group came. We also worked in Muñoz with this group. They jumped in a little more enthusiastically with Elisenia, carrying her around joyfully, etc. As they left, I had found another caregiver. Katya moved in with her 1.5 year old Jiwan for 3,000 pesos a month. (exchange rate is 1 USD = 38.85 RD) This is going well for now... until the month is up and I have to pay her!! How are we managing to buy diapers (how do you spell that word anyway - spell check comes up on both ai and ia and I am trying to finish this update a little quickly, haha, or I would look it up! Which took longer, typing that or looking it up?) Another problem is that I don't want Elisenia staying at the hostel long term. It's mixing too many programs as the hostel is a business with the art shop included. Not everyone who comes to stay will have Nikki's volunteering spirit and caregivers with the kids they tote are a bit much in the building as well. After Katya's month is up (April 20th), I would like to rent a room just a few houses down from my house (2,000 a month) and have
Ghislaine (the woman who came seeking help, if you read the post), stay with her two little ones and Elisenia. I'll also pay her 3,000 but she'll receive care for herself and her children in exchange for other help I'll ask her to provide - more related to our boys' group home which Elisenia's 12 year old brother is a part of.

So, I want to thank you all again for your support. I need to plea for help for continued support, whether you yourself give or whether you advocate. The last time I updated, I forgot to put in a clear financial update, but did include it in my
blog post where I posted the update. I put, "P.S. I forgot to include in the e-mail that we have received $464 in donations so far for baby Elisenia and have spent $277.62. We have not received any funding for Ebo, the little boy we are fostering. Additionally, Jireste's aunt is not coming to help for free. :) It is his Aunt Mari who I wrote about in this post ." I mentioned in the last update that I would like to create a committee to take financial resonsibility over this effort (whether out of their own pockets, again, or fundraising), but did not receive any reply from anyone about that. We also have only received $25 since that last update, so all of Elisenia's funds have now been used up. Please let me know if you can help. Attached are a few pictures taken by Nikki.

I have to go now. I hope that this update is not too scattered! Take care and God bless, Caitlin 


1 comentario:

  1. Caitlin,
    Great update. It clarified a lot for me on Elisenia. Also, side note that Ilayas is looking so long and lanky!